Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal
- Thread starter Phoenix Rising Team
- Start date
Action for M.E. made the following submission yesterday, June 15:
As the largest by far CFS/M.E. charity in the UK, in 2010 Action for M.E. commented on the fifth edition of the American Psychiatric Associations (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5)
We made the points that:
1. We were gravely concerned and alarmed to hear of the possibility of CFS/M.E. being classified as a psychiatric disorder, based on comments made in the APA Work Group on somatoform disorders.
2. CFS/M.E. is a long-term and disabling Illness which is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports the view that the illness is physical in origin.
3. We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.
Our concern increased considerably on reading the latest draft (18 April 2011) of DSM-5 which could have a profound and detrimental impact on people with M.E. who could so easily be misdiagnosed as having a psychiatric condition when assessed against the proposed criteria.
As the largest by far CFS/M.E. charity in the UK, in 2010 Action for M.E. commented on the fifth edition of the American Psychiatric Associations (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5)
We made the points that:
1. We were gravely concerned and alarmed to hear of the possibility of CFS/M.E. being classified as a psychiatric disorder, based on comments made in the APA Work Group on somatoform disorders.
2. CFS/M.E. is a long-term and disabling Illness which is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports the view that the illness is physical in origin.
3. We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.
Our concern increased considerably on reading the latest draft (18 April 2011) of DSM-5 which could have a profound and detrimental impact on people with M.E. who could so easily be misdiagnosed as having a psychiatric condition when assessed against the proposed criteria.
DSM-5 Web Site Period for Comments has Been Extended to July 15!
http://www.dsm5.org/Pages/Default.aspx
DSM-5 Web Site Period for Comments has Been Extended to July 15!
"We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submittng comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process."
Well, there you go...
So, those of you who did not submit now have another 4 weeks in which to submit a response. I want to see thousands telling the APA why they need to rip up these proposals and start again.
http://www.dsm5.org/Pages/Default.aspx
DSM-5 Web Site Period for Comments has Been Extended to July 15!
"We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submittng comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process."
Well, there you go...
So, those of you who did not submit now have another 4 weeks in which to submit a response. I want to see thousands telling the APA why they need to rip up these proposals and start again.
I shall continue to post submissions to this thread, to keep them altogther, but will be posting any other DSM-5 related material in the pre-existing DSM-5 threads.
DSM-5 Development does not post a list of the names of professional bodies that have submitted responses but these occasionally turn up on Google searches or on Google web alerts where they have been placed in the public domain by the bodies concerned.
Should you come across responses from other professional bodies, from any countries, I'd appreciate a copy or a link.
This is an extract from the 2011 response by the British Psychological Society to the current draft for DSM-5:
http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5 2011 - BPS response.pdf
DSM-5 2011
British Psychological Society response, June 2011
Response to the American Psychiatric Association:
DSM-5 Development
The British Psychological Society thanks the American Psychiatric Association (APA) for the opportunity to respond to the DSM-5 Development.
The British Psychological Society (the Society), incorporated by Royal Charter, is the learned and professional body for psychologists in the United Kingdom. The Society is a registered charity with a total membership of almost 50,000.
Under its Royal Charter, the objective of the Society is "to promote the advancement and diffusion of the knowledge of psychology pure and applied and especially to promote the efficiency and usefulness of members by setting up a high standard of professional education and knowledge".
The Society is committed to providing and disseminating evidence-based expertise and advice, engaging with policy and decision makers, and promoting the highest standards in learning and teaching, professional practice and research. The Society is an examining body granting certificates and diplomas in specialist areas of professional applied psychology.
We are content for our response, as well as our name and address, to be made public. We are also content for the APA to contact us in the future in relation to this response. Please direct all queries to:-
Consultation Response Team, The British Psychological Society,
48 Princess Road East, Leicester, LE1 7DR.
Email: consult@bps.org.uk Tel: (0116) 252 9508
This response was prepared on behalf of the Society by Professor Peter Kinderman, CPsychol, AFBPsS, Chair of the Division of Clinical Psychology (DCP), with contributions from Susan van Scoyoc, CPsychol, CSci, AFBPsS, committee member of the DCP and member of the Division of Heath Psychology (DHP); Dr David Harper, CPsychol, AFBPsS, Professor David Pilgrim CPsychol, AFBPsS, and Professor Richard Bentall, FBPsS, all members of the DCP; Lucy Johnstone, CPsychol, AFBPsS, committee member of the DCP; Dr Amanda C de C Williams, CPsychol, member of both the DCP and the DHP, and Professor Pamela James, CPsychol, AFBPsS, committee member of the Division of Counselling Psychology. We would like to thank Berry Neil for informing aspects of this response. We hope you find our comments useful.
Dr C A Allan, CPsychol, CSci, AFBPsS
Chair, Professional Practice Board
[...]
Page 17 of 26
J00 Complex Somatic Symptom Disorder
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
It is good to see the assumptions implicit in somatization terminology have been removed, but we retain concerns about the criteria used.
Concern about medical seriousness arises from the universal experience of pain as a warning signal of something wrong, as in many acute pains. Until and unless an adequate explanation is given to the person with persistent pain, distinguishing it from the alarm signal of acute pain, they continue to search for a medical explanation as is the case in acute pain. Reassurance that nothing shows on investigation often exacerbates the patients concerns that what they have is hard to detect or diagnose. The judgment of what is disproportionate or excessive is a subjective, value-laden, issue.
J01 Simple Somatic Symptom Disorder
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
It is good to see the assumptions implicit in somatization terminology have been removed, but we retain concerns about the criteria used.
Concern about medical seriousness arises from the universal experience of pain as a warning signal of something wrong, as in many acute pains. Until and unless an adequate explanation is given to the person with persistent pain, distinguishing it from the alarm signal of acute pain, they continue to search for a medical explanation as is the case in acute pain. Reassurance that nothing shows on investigation often exacerbates the patients concerns that what they have is hard to detect or diagnose. The judgment of what is disproportionate or excessive is a subjective, value-laden, issue.
J02-06 Somatic Symptom Disorders
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
[...]
Text of full document:
http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5 2011 - BPS response.pdf
DSM-5 Development does not post a list of the names of professional bodies that have submitted responses but these occasionally turn up on Google searches or on Google web alerts where they have been placed in the public domain by the bodies concerned.
Should you come across responses from other professional bodies, from any countries, I'd appreciate a copy or a link.
This is an extract from the 2011 response by the British Psychological Society to the current draft for DSM-5:
http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5 2011 - BPS response.pdf
DSM-5 2011
British Psychological Society response, June 2011
Response to the American Psychiatric Association:
DSM-5 Development
The British Psychological Society thanks the American Psychiatric Association (APA) for the opportunity to respond to the DSM-5 Development.
The British Psychological Society (the Society), incorporated by Royal Charter, is the learned and professional body for psychologists in the United Kingdom. The Society is a registered charity with a total membership of almost 50,000.
Under its Royal Charter, the objective of the Society is "to promote the advancement and diffusion of the knowledge of psychology pure and applied and especially to promote the efficiency and usefulness of members by setting up a high standard of professional education and knowledge".
The Society is committed to providing and disseminating evidence-based expertise and advice, engaging with policy and decision makers, and promoting the highest standards in learning and teaching, professional practice and research. The Society is an examining body granting certificates and diplomas in specialist areas of professional applied psychology.
We are content for our response, as well as our name and address, to be made public. We are also content for the APA to contact us in the future in relation to this response. Please direct all queries to:-
Consultation Response Team, The British Psychological Society,
48 Princess Road East, Leicester, LE1 7DR.
Email: consult@bps.org.uk Tel: (0116) 252 9508
This response was prepared on behalf of the Society by Professor Peter Kinderman, CPsychol, AFBPsS, Chair of the Division of Clinical Psychology (DCP), with contributions from Susan van Scoyoc, CPsychol, CSci, AFBPsS, committee member of the DCP and member of the Division of Heath Psychology (DHP); Dr David Harper, CPsychol, AFBPsS, Professor David Pilgrim CPsychol, AFBPsS, and Professor Richard Bentall, FBPsS, all members of the DCP; Lucy Johnstone, CPsychol, AFBPsS, committee member of the DCP; Dr Amanda C de C Williams, CPsychol, member of both the DCP and the DHP, and Professor Pamela James, CPsychol, AFBPsS, committee member of the Division of Counselling Psychology. We would like to thank Berry Neil for informing aspects of this response. We hope you find our comments useful.
Dr C A Allan, CPsychol, CSci, AFBPsS
Chair, Professional Practice Board
[...]
Page 17 of 26
J00 Complex Somatic Symptom Disorder
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
It is good to see the assumptions implicit in somatization terminology have been removed, but we retain concerns about the criteria used.
Concern about medical seriousness arises from the universal experience of pain as a warning signal of something wrong, as in many acute pains. Until and unless an adequate explanation is given to the person with persistent pain, distinguishing it from the alarm signal of acute pain, they continue to search for a medical explanation as is the case in acute pain. Reassurance that nothing shows on investigation often exacerbates the patients concerns that what they have is hard to detect or diagnose. The judgment of what is disproportionate or excessive is a subjective, value-laden, issue.
J01 Simple Somatic Symptom Disorder
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
It is good to see the assumptions implicit in somatization terminology have been removed, but we retain concerns about the criteria used.
Concern about medical seriousness arises from the universal experience of pain as a warning signal of something wrong, as in many acute pains. Until and unless an adequate explanation is given to the person with persistent pain, distinguishing it from the alarm signal of acute pain, they continue to search for a medical explanation as is the case in acute pain. Reassurance that nothing shows on investigation often exacerbates the patients concerns that what they have is hard to detect or diagnose. The judgment of what is disproportionate or excessive is a subjective, value-laden, issue.
J02-06 Somatic Symptom Disorders
As stated in our general comments, we are concerned that clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.
We believe that classifying these problems as illnesses misses the relational context of problems and the undeniable social causation of many such problems. For psychologists, our well-being and mental health stem from our frameworks of understanding of the world, frameworks which are themselves the product of the experiences and learning through our lives.
Many of these concerns also apply to this area.
[...]
Text of full document:
http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5 2011 - BPS response.pdf
DSM V
I applaud the letters that have been written to the DSM V Committee working on Complex Somataform Disorders. I have written my own.
I am a psychiatrist who practice 32 years, developed CFIDS/FMS in 2004 and ultimately had to close my practice due to profoundly low energy.In 2005, I was fortunate to gain the help of Jacob Teitelbaum in Annapolis,MD which I kept until he left private practice in 2007. On his protocol I regained ~30% of my pre-illness energy level. I have attempted part-time work 8 different times, regressing energy-wise each time over a 3 month period. I now am under the care of Neil Nathan in Santa Rosa, CA, trying "new treatments". I am using a methylation protocol & an amino acid neurotransmitter precursor protocol. Thyroid supplementation along with hydrocortisone & testosterone have helped stamina some. Basically, I am maintaining the 30-35% of my pre-illness energy level. I tested negative for XMRV Virus (serology & culture) via WPI Lab. I maintain that an etiology & treatment will be found, but more quickly if CFIDS/FMS is not given a psychiatric diagnostic category. I re-entered my own psychotherapy with an esteemed psychiatrist early on in my illness, hoping I had a "depressive equivalent" or a treatable psychiatric disorder. After 6 months of psychotherapy, he recommended that I pursue rheumatology,immunology,endocrinology & alternative medicine researchers at various medical schools & centers who were interested in CFIDS & FMS. Psychotherapy & antidepressant medication are usually helpful in these illnesses, but not because of a psychiatric disorder. Antidepressants help modulate pain. Psychotherapy helps in a supportive & insight gaining manner. CBT is helpful, but definitely not the answer to this medical illness.
It is my hope that this entry will be of encouragement to any who suffer CFIDS/ME/FMS.
Bill Goodin, M.D.
I applaud the letters that have been written to the DSM V Committee working on Complex Somataform Disorders. I have written my own.
I am a psychiatrist who practice 32 years, developed CFIDS/FMS in 2004 and ultimately had to close my practice due to profoundly low energy.In 2005, I was fortunate to gain the help of Jacob Teitelbaum in Annapolis,MD which I kept until he left private practice in 2007. On his protocol I regained ~30% of my pre-illness energy level. I have attempted part-time work 8 different times, regressing energy-wise each time over a 3 month period. I now am under the care of Neil Nathan in Santa Rosa, CA, trying "new treatments". I am using a methylation protocol & an amino acid neurotransmitter precursor protocol. Thyroid supplementation along with hydrocortisone & testosterone have helped stamina some. Basically, I am maintaining the 30-35% of my pre-illness energy level. I tested negative for XMRV Virus (serology & culture) via WPI Lab. I maintain that an etiology & treatment will be found, but more quickly if CFIDS/FMS is not given a psychiatric diagnostic category. I re-entered my own psychotherapy with an esteemed psychiatrist early on in my illness, hoping I had a "depressive equivalent" or a treatable psychiatric disorder. After 6 months of psychotherapy, he recommended that I pursue rheumatology,immunology,endocrinology & alternative medicine researchers at various medical schools & centers who were interested in CFIDS & FMS. Psychotherapy & antidepressant medication are usually helpful in these illnesses, but not because of a psychiatric disorder. Antidepressants help modulate pain. Psychotherapy helps in a supportive & insight gaining manner. CBT is helpful, but definitely not the answer to this medical illness.
It is my hope that this entry will be of encouragement to any who suffer CFIDS/ME/FMS.
Bill Goodin, M.D.
What a great letter Bill. It expresses my thoughts perfectly. I wasn't able to do one so just copied a template, changed it a bit and sent it in. It was a wonderful psychiatrist who diagnosed me and had me referred on. I wish that I could have kept him but am told I do not qualify under the criteria. I was on effexor and found that it did help pain but came off of it when I had problems with bp Thank you so much for that letter Bill.
glen
A reminder that there are still 15 days left in which to submit letters of concern to the APA in the second public review of draft criteria
I am collating submissions to DSM-5 on my website. If you have already submitted and would like a copy of your submission included with the others on my site, please forward a copy to me via PM or to me.agenda@virgin.net stating how you would like to be styled. No email addresses will be published.
If you are aware of a patient org that has submitted but is not yet included, or a professional who might be prepared to release a copy for publication on my site, I'd be pleased if you could let me know.
http://wp.me/PKrrB-19a
Page 1: International patient organizations
Coalition4ME/CFS (US); CFIDS; Rocky Mountain CFS/ME and FM Association; National ME/FM Action Network (Canada); The Danish ME Association; ESME; EMEA; The ME Association UK); Action for M.E.; IACFS/ME (US); ME Free For All.org (UK); The Young ME Sufferers Trust (UK)
Page 2: Medical, allied health and other professional stakeholders
Richard A. Van Konynenburg, Ph.D. (US); Therese Duncan J.D., CADCII, ICADC (US); Angela Kennedy, sociology lecturer (UK); Dr John L Whiting MD, (Australia)
Page 3: Patients and advocates
B Tilley (UK); Suzy Chapman (UK); Glen Rich (Canada); Maarten Maartensz (NL); US patient 1; Jay Spero (US); UK patient 2; 26yearsME/CFS; UK patient 1; Gabrielle Lewis (UK); Chris Douglas (UK); Kati (Canada); Kevin Short (UK); Susanna Agardy (Australia); Mary Barker (US); Peter Kemp (UK); Mary M. Schweitzer (US)
Page 4: Professional bodies
British Psychological Society (BPS)
---------
The closing date for comments in the second DSM-5 public review is extended to July 15.
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Copies of last years submissions here: http://wp.me/PKrrB-AQ
Copies of this years submissions here: http://wp.me/PKrrB-19a
I am collating submissions to DSM-5 on my website. If you have already submitted and would like a copy of your submission included with the others on my site, please forward a copy to me via PM or to me.agenda@virgin.net stating how you would like to be styled. No email addresses will be published.
If you are aware of a patient org that has submitted but is not yet included, or a professional who might be prepared to release a copy for publication on my site, I'd be pleased if you could let me know.
http://wp.me/PKrrB-19a
Page 1: International patient organizations
Coalition4ME/CFS (US); CFIDS; Rocky Mountain CFS/ME and FM Association; National ME/FM Action Network (Canada); The Danish ME Association; ESME; EMEA; The ME Association UK); Action for M.E.; IACFS/ME (US); ME Free For All.org (UK); The Young ME Sufferers Trust (UK)
Page 2: Medical, allied health and other professional stakeholders
Richard A. Van Konynenburg, Ph.D. (US); Therese Duncan J.D., CADCII, ICADC (US); Angela Kennedy, sociology lecturer (UK); Dr John L Whiting MD, (Australia)
Page 3: Patients and advocates
B Tilley (UK); Suzy Chapman (UK); Glen Rich (Canada); Maarten Maartensz (NL); US patient 1; Jay Spero (US); UK patient 2; 26yearsME/CFS; UK patient 1; Gabrielle Lewis (UK); Chris Douglas (UK); Kati (Canada); Kevin Short (UK); Susanna Agardy (Australia); Mary Barker (US); Peter Kemp (UK); Mary M. Schweitzer (US)
Page 4: Professional bodies
British Psychological Society (BPS)
---------
The closing date for comments in the second DSM-5 public review is extended to July 15.
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Copies of last years submissions here: http://wp.me/PKrrB-AQ
Copies of this years submissions here: http://wp.me/PKrrB-19a
DSM-5 public review closes on Friday
There is just today and tomorrow (midnight Friday, US) left in which to submit letters of concern in response to the potentially damaging proposals being put forward by the Work Group for Somatic Symptom Disorders the DSM-5 committee charged with the revision of existing DSM-IV Somatoform Disorders categories.
Patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on my site. Caroline says she is making her submission available for other patients to use, if they wish.
If you havent already submitted a comment, please do, however brief.
Youll find information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.
Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.
For examples of other letters of concern, there are copies of this years submissions, including the Coalition4ME/CFSs resource materials and template letter, collated here: http://wp.me/PKrrB-19a.
These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.
If you have already submitted but have other points to make, please submit a second response.
If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the Functional Somatic Syndromes and Medically Unexplained umbrellas.
If the Work Groups current proposals are approved, these illnesses will be sitting ducks for a bolt-on of an additional mental health diagnosis of a Somatic Symptom Disorder or misdiagnosis with CSSD or SSSD.
If you havent yet registered your concerns, please get a letter in before the feedback period closes on Friday!
Following closure of this second, extended stakeholder review and feedback exercise, I will update the DSM-5 threads and my site with any revisions to existing proposals between now and the third stakeholder review which is currently scheduled for January - February, 2012.
Following the close of last year's review, the APA issued a news release which included a figure for the overall number of responses received. The final figure, last year, was reported as over 8,000. I'll post any information on the number of responses and any breakdown of the figures for the various Work Groups, as information becomes available.
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD
Copies of this years submissions are being collated here: http://wp.me/PKrrB-19a
-------------------
---------
Suzy Chapman
me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda
There is just today and tomorrow (midnight Friday, US) left in which to submit letters of concern in response to the potentially damaging proposals being put forward by the Work Group for Somatic Symptom Disorders the DSM-5 committee charged with the revision of existing DSM-IV Somatoform Disorders categories.
Patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on my site. Caroline says she is making her submission available for other patients to use, if they wish.
If you havent already submitted a comment, please do, however brief.
Youll find information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.
Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.
For examples of other letters of concern, there are copies of this years submissions, including the Coalition4ME/CFSs resource materials and template letter, collated here: http://wp.me/PKrrB-19a.
These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.
If you have already submitted but have other points to make, please submit a second response.
If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the Functional Somatic Syndromes and Medically Unexplained umbrellas.
If the Work Groups current proposals are approved, these illnesses will be sitting ducks for a bolt-on of an additional mental health diagnosis of a Somatic Symptom Disorder or misdiagnosis with CSSD or SSSD.
If you havent yet registered your concerns, please get a letter in before the feedback period closes on Friday!
Following closure of this second, extended stakeholder review and feedback exercise, I will update the DSM-5 threads and my site with any revisions to existing proposals between now and the third stakeholder review which is currently scheduled for January - February, 2012.
Following the close of last year's review, the APA issued a news release which included a figure for the overall number of responses received. The final figure, last year, was reported as over 8,000. I'll post any information on the number of responses and any breakdown of the figures for the various Work Groups, as information becomes available.
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD
Copies of this years submissions are being collated here: http://wp.me/PKrrB-19a
-------------------
Submission by patient advocate, Caroline Davis
J 00 Complex Somatic Symptom Disorder
I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.
CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed excessive concern about his or her health.
Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:
a) The individuals realisation that their illness might not resolve, and/or might possibly be a disability and
b) A concerted effort to research their condition and seek more tests and treatments in order to get well and
c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.
A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:
(2) Disproportionate and persistent concerns about the medical seriousness of ones symptoms and
(3) Excessive time and energy devoted to these symptoms or health concerns
The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing ones symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save ones job and prospects for the future.
There is no empirical data to support the existence of CSSD. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely a construct. There is no empirical evidence to support this construct but plenty of circumstantial and factual evidence for why this construct has been proposed and is being pushed forward with such unseemly speed.
Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.
There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as CSSD which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.
Please do not let the DSM and by implication the WHO classifications become the vehicle of Governments and insurance companies to get their financial needs met.
I urge the committee to see past the claim that: a diagnosis of CSSD could be applied to any patient with any diagnosis. In clinical practice, as well as in your own discussions, it is already clear that this diagnosis would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new bucket classification to financially manage-away these conditions.
I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of CSSD as a possibility for diagnosis will tap into the already hysterical media and biopsychosocial research claims and pronouncements about these misunderstood and underestimated conditions.
The consequences unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.
Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.
Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.
How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?
While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.
Yours sincerely
Caroline Davis
Patient, advocate
J 00 Complex Somatic Symptom Disorder
I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.
CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed excessive concern about his or her health.
Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:
a) The individuals realisation that their illness might not resolve, and/or might possibly be a disability and
b) A concerted effort to research their condition and seek more tests and treatments in order to get well and
c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.
A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:
(2) Disproportionate and persistent concerns about the medical seriousness of ones symptoms and
(3) Excessive time and energy devoted to these symptoms or health concerns
The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing ones symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save ones job and prospects for the future.
There is no empirical data to support the existence of CSSD. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely a construct. There is no empirical evidence to support this construct but plenty of circumstantial and factual evidence for why this construct has been proposed and is being pushed forward with such unseemly speed.
Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.
There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as CSSD which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.
Please do not let the DSM and by implication the WHO classifications become the vehicle of Governments and insurance companies to get their financial needs met.
I urge the committee to see past the claim that: a diagnosis of CSSD could be applied to any patient with any diagnosis. In clinical practice, as well as in your own discussions, it is already clear that this diagnosis would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new bucket classification to financially manage-away these conditions.
I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of CSSD as a possibility for diagnosis will tap into the already hysterical media and biopsychosocial research claims and pronouncements about these misunderstood and underestimated conditions.
The consequences unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.
Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.
Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.
How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?
While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.
Yours sincerely
Caroline Davis
Patient, advocate
---------
Suzy Chapman
me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda
Act today, while there's still time (DSM-5) + new response
From Suzy Chapman for http://dxrevisionwatch.wordpress.com
15 July 2011
Final day for submitting DSM-5 feedback
If you haven't already submitted a letter, this year, and if you are up to it, I urge you to register and submit feedback, today. The closing date has been extended by the APA to today, July 15.
I am still collating submissions to DSM-5 on my website. If you have already submitted and would like a copy of your letter included on my site, please forward a copy to me.agenda@virgin.net stating how you would like to be styled. No email addresses will be published or made available to others.
Thanks to all those organizations and individuals who have already submitted or raised awareness:
Copies of this years submissions, including the Coalition4ME's "Call to Action" resources and template letter, are being collated here:
http://wp.me/PKrrB-19a
-----------
One of the latest submissions:
Submission from US patient 1
For the attention of the DSM-5 Task Force and particularly to the members of the Somatic Symptom Disorder Work Group:
I have reviewed the draft for the proposed category of Somatic Symptom Disorders, and in particular Complex Somatic Symptom Disorder (CSSD), and find major flaws in their diagnostic philosophy and criteria that would easily lead to the misdiagnosis of, or unwarranted add-on psychological diagnoses for, any number of physical diseases or conditions with no psychosomatic component, but which lack clear biomarkers, sufficiently diagnostic tests, or are comprised of medically unexplained symptoms. I strongly recommend that the clinical viability of the SSD category be re-examined and that the CSSD category be abandoned altogether.
There is a fundamental flaw in the way 'somatic symptoms disorders' are described in the latest draft:
"This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction...Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors."
This is unacceptably broad characterization. How many diseases exist in medicine that would not in some way fit this description? Virtually all immunologically-based diseases, and most pathogen-associated ones, could hypothetically be impacted by biological, psychosocial, and social factors. Yet initiation, exacerbation and maintenance can represent completely distinct etiologies, and "combinations" of biological and psychological or social factors could include, again, almost every disease in existence, including those for which there is not hard evidence (or evidence at all) to suggest that psychological intervention makes a significant impact or indeed that there is a 'psychological component' to the disease that can be isolated at all.
That brings up the essential problem with the entire concept of somatic symptoms disorders - they are based on an amalgam of clinical observations and scant psychological studies that are overwhelmingly poorly powered. Psychology in general (and psychosomatic study in particular) is an inherently difficult field in which to employ an empirical scientific approach, so it is largely inappropriate to treat the concepts that emerge from psychology on an empirically equivalent footing with the more rigorously positivist data that supports biomedical findings. The two are often philosophically incompatible; the concept of somatic symptom disorders is highly metaphorical, and its broad application in clinical medical practice can only lead to confusion and misdiagnosis. This is especially true in its application to diseases that are poorly understood. The precise etiology of these illnesses is still hotly debated; many clinicians and biomedical researchers who specialize in them are in total disagreement with psychosomatic specialists who speculate upon a role for psychiatric components based on studies within their own field. Therefore, until these poorly understood illnesses have been more thoroughly researched, it is wholly unscientific to assume a role for psychiatric factors in disease causation, initiation, or persistence. To do otherwise would be to inappropriately create a psychiatric diagnosis for many patients who may not require one, which carries with it the potential for iatrogenic harm and social stigma.
Is there any medical evidence that the condition(s) defined by these criteria actually exists? Has it been accepted by clinicians who treat, for instance, diabetes? Has the DSM-5 working group consulted physician's organizations about the concept of adding such psychiatric diagnoses to essentially any medical condition? Has the impact this will have on healthcare delivery and insurance reimbursement truly been taken into consideration during such consultations? I suspect not, yet these are vital subjects.
The proposed categories and guidelines will create a scenario where a clinician will have too much power to determine whether a patient's response to their bodily symptoms and concerns about their health are "excessive", or their perception of their level of disability "disproportionate". It will create a tendency towards violation of the precept of "do no harm" by compromising the centrality of patient input and the equality of the doctor-patient relationship. It will compromise the ability of clinicians to continue to reassess a case over time through empirical observations by encouraging an a priori framework and subjective bias in the clinicians' minds. The effect for patient care could be disastrous, as legitimate and significant complaints could far more easily be ignored; further, insurance reimbursement for biomedical tests and treatments is certain to suffer when a psychological diagnosis is added to the physical one.
A clear example involves the proposed CSSD category and its potential effect on patients with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) - hereafter referred to jointly as ME/CFS. As defined, a CSSD diagnosis could be inappropriately applied to patients with ME/CFS - a disease for which a solely physical pathology has been firmly established. Too many ME/CFS patients would easily fall into the sinkhole of the excessively indeterminate and highly subjective diagnostic criteria for CSSD.
As stated in the draft, CSSD diagnosis requires that criteria labeled A, B and C be met; the first and last are obviously met by ME/CFS as well as any other chronic physical disease. The second is outlined as follows:
"B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:
(1) High level of health-related anxiety.
(2) Disproportionate and persistent concerns about the medical seriousness of one's symptoms.
(3) Excessive time and energy devoted to these symptoms or health concerns."
The determination of points 1-3 is far too subjective for this to be the only criterion standing between a patient with a poorly defined physical disease and a misdiagnosis of mental illness. Whereas such a criterion should be highly discriminative between physical and psychological elements, criterion B focuses upon psychological assessments of highly questionable empiric strength and clinical value. As it is incapable of distinguishing many physical symptoms and distress from psychological ones, it would heavily overdiagnose psychopathology. The preconceptions and limitations of the practitioner become far too important here, as do highly subjective judgements; to let these elements potentially intrude into the realm of physical disease diagnosis is a grave error. Let us consider each of the subcriteria 1-3 in turn, with relevance to ME/CFS:
(1) - Anxiousness or anxiety is a ubiquitous and extremely frequently diagnosed symptom. The health concerns of the majority of ME/CFS patients are similar to those of HIV positive patients; however, absent the same diagnostic clarity and the same degree of biomedical knowledge about the disease process, the concerns of ME/CFS patients are all too easily dismissed as excessive, i.e. anxiety, by clinicians who know little or nothing about ME/CFS. It should also be noted that the experience of having any medically inexplicable and likely untreatable disease itself can engender a high level of anxiety, yet that fact is not taken into consideration in this criterion. Thus in both ME/CFS and other conditions that are less understood, it is exceedingly easy for a clinician to inappropriately apply subcriterion 2.
(2) - The assumption that every clinician is suitably educated about every physical disease is obviously the Achilles' heel of this and the other subcriteria. Although ME/CFS is a serious physical disease that affects a rough estimate of a million people in the United States alone, it sadly is misunderstood and/or not taken seriously by the majority of clinicians, who know little or nothing about it. (The situation is actually similar for many other conditions for which a physical cause is never even questioned, such as adult mitochondrial diseases and various dysautonomias.) How can a clinician who knows little or nothing about a disease determine the medical seriousness of a patient's symptoms, and therefore whether a patient's response is disproportionate? And if the disease is chronic in nature, would it not be normal for a patient to express 'persistent' concern about it?
Part of the problem arises when a clinician considers certain bodily symptoms to be normal' regardless of context. It should be clear that a symptom is not something that can be standardized, yet members of the DSM-5 working group have previously stated that orthostatic dizziness is a normal bodily sensation. This is a dubious statement indeed; it is not normal to experience this symptom chronically or severely. Various forms of orthostatic intolerance are very common in ME/CFS, causing persistent or recurring dizziness that is certainly not normal and should be treated if possible.
Another issue is that a practitioner who is simply unaware of some of the hallmarks of ME/CFS will all too easily mischaracterize genuine patient concerns as excessive. As just one example, if the practitioner is unaware of the phenomenon of post-exertional decline, s/he will easily mistake an ME/CFS patients concerns about relapse, etc from overexertion for catastrophizing.
Thus, subcriterion 2 could be wrongly attributed to an ME/CFS patient by any practitioner lacking in knowledge or understanding of the disease and of research on the disease. Given the extremely poor state of medical education about ME/CFS, the likelihood of inappropriate labeling is great - a point that cannot be overstated.
(3) - Any disabling or distressing physical symptoms of sufficient intensity can dominate a patients life; thus subcriterion 3 is so lacking in clinical rigor and definition that it could be applied incorrectly to those with almost any disease with no psychopathology, but especially to ME/CFS patients due to the relative ignorance of a majority of clinicians about the disease.
Thus, false identification of criterion B in ME/CFS (and other diseases) can occur too easily and in too many ways for it to have any real diagnostic value. As criteria A and C are also met by default in ME/CFS, that means the CSSD criteria as a whole will in clinical practice almost certainly result in the misdiagnoses and the erroneous labeling of many ME/CFS patients with CSSD.
In this context, it should be remembered that the repercussions of having an erroneous psychosomatic label of any kind on a patients medical record, especially if s/he has a controversial disease like ME/CFS, can have a terrible impact on the patients physical, emotional, and economic well-being; treatment by medical professionals, insurance claims and government benefits for physical disability can all be denied, and one can easily imagine the subsequent consequences.
The case of ME/CFS provides just one obvious example of how major flaws in the criteria for Complex Somatic Symptom Disorder (CSSD) would easily lead to the misdiagnosis of, or inappropriate additional psychological diagnosis for, patients with a poorly understood physical disease that lacks a significant psychological component. As such misdiagnoses or add-on diagnoses could lead to extreme iatrogenic harm, I cannot overstate to the DSM-5 Task Force the importance of removing the category of CSSD.
Additionally, I hope that the Task Force will revisit the conceptual framework of Somatic Symptom Disorders themselves.
I thank you for your time and consideration.
US patient 1
-----------------
Resources
The two key PDF documents "Disorders Descriptions" and "Rationale", which expand on the Work Group's proposals are here:
http://tinyurl.com/SSD-Disorders-Description
http://tinyurl.com/SSD-Justification-of-Criteria
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Once registered and logged in, leave comment on CSSD criteria here: http://tinyurl.com/DSM-5-CSSD
Suzy Chapman
_____________________
me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda
From Suzy Chapman for http://dxrevisionwatch.wordpress.com
15 July 2011
Final day for submitting DSM-5 feedback
If you haven't already submitted a letter, this year, and if you are up to it, I urge you to register and submit feedback, today. The closing date has been extended by the APA to today, July 15.
I am still collating submissions to DSM-5 on my website. If you have already submitted and would like a copy of your letter included on my site, please forward a copy to me.agenda@virgin.net stating how you would like to be styled. No email addresses will be published or made available to others.
Thanks to all those organizations and individuals who have already submitted or raised awareness:
Copies of this years submissions, including the Coalition4ME's "Call to Action" resources and template letter, are being collated here:
http://wp.me/PKrrB-19a
-----------
One of the latest submissions:
Submission from US patient 1
For the attention of the DSM-5 Task Force and particularly to the members of the Somatic Symptom Disorder Work Group:
I have reviewed the draft for the proposed category of Somatic Symptom Disorders, and in particular Complex Somatic Symptom Disorder (CSSD), and find major flaws in their diagnostic philosophy and criteria that would easily lead to the misdiagnosis of, or unwarranted add-on psychological diagnoses for, any number of physical diseases or conditions with no psychosomatic component, but which lack clear biomarkers, sufficiently diagnostic tests, or are comprised of medically unexplained symptoms. I strongly recommend that the clinical viability of the SSD category be re-examined and that the CSSD category be abandoned altogether.
There is a fundamental flaw in the way 'somatic symptoms disorders' are described in the latest draft:
"This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction...Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors."
This is unacceptably broad characterization. How many diseases exist in medicine that would not in some way fit this description? Virtually all immunologically-based diseases, and most pathogen-associated ones, could hypothetically be impacted by biological, psychosocial, and social factors. Yet initiation, exacerbation and maintenance can represent completely distinct etiologies, and "combinations" of biological and psychological or social factors could include, again, almost every disease in existence, including those for which there is not hard evidence (or evidence at all) to suggest that psychological intervention makes a significant impact or indeed that there is a 'psychological component' to the disease that can be isolated at all.
That brings up the essential problem with the entire concept of somatic symptoms disorders - they are based on an amalgam of clinical observations and scant psychological studies that are overwhelmingly poorly powered. Psychology in general (and psychosomatic study in particular) is an inherently difficult field in which to employ an empirical scientific approach, so it is largely inappropriate to treat the concepts that emerge from psychology on an empirically equivalent footing with the more rigorously positivist data that supports biomedical findings. The two are often philosophically incompatible; the concept of somatic symptom disorders is highly metaphorical, and its broad application in clinical medical practice can only lead to confusion and misdiagnosis. This is especially true in its application to diseases that are poorly understood. The precise etiology of these illnesses is still hotly debated; many clinicians and biomedical researchers who specialize in them are in total disagreement with psychosomatic specialists who speculate upon a role for psychiatric components based on studies within their own field. Therefore, until these poorly understood illnesses have been more thoroughly researched, it is wholly unscientific to assume a role for psychiatric factors in disease causation, initiation, or persistence. To do otherwise would be to inappropriately create a psychiatric diagnosis for many patients who may not require one, which carries with it the potential for iatrogenic harm and social stigma.
Is there any medical evidence that the condition(s) defined by these criteria actually exists? Has it been accepted by clinicians who treat, for instance, diabetes? Has the DSM-5 working group consulted physician's organizations about the concept of adding such psychiatric diagnoses to essentially any medical condition? Has the impact this will have on healthcare delivery and insurance reimbursement truly been taken into consideration during such consultations? I suspect not, yet these are vital subjects.
The proposed categories and guidelines will create a scenario where a clinician will have too much power to determine whether a patient's response to their bodily symptoms and concerns about their health are "excessive", or their perception of their level of disability "disproportionate". It will create a tendency towards violation of the precept of "do no harm" by compromising the centrality of patient input and the equality of the doctor-patient relationship. It will compromise the ability of clinicians to continue to reassess a case over time through empirical observations by encouraging an a priori framework and subjective bias in the clinicians' minds. The effect for patient care could be disastrous, as legitimate and significant complaints could far more easily be ignored; further, insurance reimbursement for biomedical tests and treatments is certain to suffer when a psychological diagnosis is added to the physical one.
A clear example involves the proposed CSSD category and its potential effect on patients with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) - hereafter referred to jointly as ME/CFS. As defined, a CSSD diagnosis could be inappropriately applied to patients with ME/CFS - a disease for which a solely physical pathology has been firmly established. Too many ME/CFS patients would easily fall into the sinkhole of the excessively indeterminate and highly subjective diagnostic criteria for CSSD.
As stated in the draft, CSSD diagnosis requires that criteria labeled A, B and C be met; the first and last are obviously met by ME/CFS as well as any other chronic physical disease. The second is outlined as follows:
"B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:
(1) High level of health-related anxiety.
(2) Disproportionate and persistent concerns about the medical seriousness of one's symptoms.
(3) Excessive time and energy devoted to these symptoms or health concerns."
The determination of points 1-3 is far too subjective for this to be the only criterion standing between a patient with a poorly defined physical disease and a misdiagnosis of mental illness. Whereas such a criterion should be highly discriminative between physical and psychological elements, criterion B focuses upon psychological assessments of highly questionable empiric strength and clinical value. As it is incapable of distinguishing many physical symptoms and distress from psychological ones, it would heavily overdiagnose psychopathology. The preconceptions and limitations of the practitioner become far too important here, as do highly subjective judgements; to let these elements potentially intrude into the realm of physical disease diagnosis is a grave error. Let us consider each of the subcriteria 1-3 in turn, with relevance to ME/CFS:
(1) - Anxiousness or anxiety is a ubiquitous and extremely frequently diagnosed symptom. The health concerns of the majority of ME/CFS patients are similar to those of HIV positive patients; however, absent the same diagnostic clarity and the same degree of biomedical knowledge about the disease process, the concerns of ME/CFS patients are all too easily dismissed as excessive, i.e. anxiety, by clinicians who know little or nothing about ME/CFS. It should also be noted that the experience of having any medically inexplicable and likely untreatable disease itself can engender a high level of anxiety, yet that fact is not taken into consideration in this criterion. Thus in both ME/CFS and other conditions that are less understood, it is exceedingly easy for a clinician to inappropriately apply subcriterion 2.
(2) - The assumption that every clinician is suitably educated about every physical disease is obviously the Achilles' heel of this and the other subcriteria. Although ME/CFS is a serious physical disease that affects a rough estimate of a million people in the United States alone, it sadly is misunderstood and/or not taken seriously by the majority of clinicians, who know little or nothing about it. (The situation is actually similar for many other conditions for which a physical cause is never even questioned, such as adult mitochondrial diseases and various dysautonomias.) How can a clinician who knows little or nothing about a disease determine the medical seriousness of a patient's symptoms, and therefore whether a patient's response is disproportionate? And if the disease is chronic in nature, would it not be normal for a patient to express 'persistent' concern about it?
Part of the problem arises when a clinician considers certain bodily symptoms to be normal' regardless of context. It should be clear that a symptom is not something that can be standardized, yet members of the DSM-5 working group have previously stated that orthostatic dizziness is a normal bodily sensation. This is a dubious statement indeed; it is not normal to experience this symptom chronically or severely. Various forms of orthostatic intolerance are very common in ME/CFS, causing persistent or recurring dizziness that is certainly not normal and should be treated if possible.
Another issue is that a practitioner who is simply unaware of some of the hallmarks of ME/CFS will all too easily mischaracterize genuine patient concerns as excessive. As just one example, if the practitioner is unaware of the phenomenon of post-exertional decline, s/he will easily mistake an ME/CFS patients concerns about relapse, etc from overexertion for catastrophizing.
Thus, subcriterion 2 could be wrongly attributed to an ME/CFS patient by any practitioner lacking in knowledge or understanding of the disease and of research on the disease. Given the extremely poor state of medical education about ME/CFS, the likelihood of inappropriate labeling is great - a point that cannot be overstated.
(3) - Any disabling or distressing physical symptoms of sufficient intensity can dominate a patients life; thus subcriterion 3 is so lacking in clinical rigor and definition that it could be applied incorrectly to those with almost any disease with no psychopathology, but especially to ME/CFS patients due to the relative ignorance of a majority of clinicians about the disease.
Thus, false identification of criterion B in ME/CFS (and other diseases) can occur too easily and in too many ways for it to have any real diagnostic value. As criteria A and C are also met by default in ME/CFS, that means the CSSD criteria as a whole will in clinical practice almost certainly result in the misdiagnoses and the erroneous labeling of many ME/CFS patients with CSSD.
In this context, it should be remembered that the repercussions of having an erroneous psychosomatic label of any kind on a patients medical record, especially if s/he has a controversial disease like ME/CFS, can have a terrible impact on the patients physical, emotional, and economic well-being; treatment by medical professionals, insurance claims and government benefits for physical disability can all be denied, and one can easily imagine the subsequent consequences.
The case of ME/CFS provides just one obvious example of how major flaws in the criteria for Complex Somatic Symptom Disorder (CSSD) would easily lead to the misdiagnosis of, or inappropriate additional psychological diagnosis for, patients with a poorly understood physical disease that lacks a significant psychological component. As such misdiagnoses or add-on diagnoses could lead to extreme iatrogenic harm, I cannot overstate to the DSM-5 Task Force the importance of removing the category of CSSD.
Additionally, I hope that the Task Force will revisit the conceptual framework of Somatic Symptom Disorders themselves.
I thank you for your time and consideration.
US patient 1
-----------------
Resources
The two key PDF documents "Disorders Descriptions" and "Rationale", which expand on the Work Group's proposals are here:
http://tinyurl.com/SSD-Disorders-Description
http://tinyurl.com/SSD-Justification-of-Criteria
Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders
Once registered and logged in, leave comment on CSSD criteria here: http://tinyurl.com/DSM-5-CSSD
Suzy Chapman
_____________________
me.agenda@virgin.net
http://dxrevisionwatch.wordpress.com
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda
25% ME Group & Stonebird: Submission re: DSM-V and ME/CFS
The following submission has been released today by the 25% ME Group (UK).
The Medical Advisers to the 25% ME Group are Dr Nigel Speight and Dr Byron Hyde. I cannot confirm whether either has submitted a letter of concern. An alert for the DSM-5 second stakeholder review and key documents were sent to Dr Hyde by me on June 1, but no response has been received.
Both the 25% ME Group and Invest in ME submitted last year. It is not known whether Invest in ME has submitted this year, but they are members of EMEA (http://www.euro-me.org/UK IiME.htm) which has submitted a response, a copy of which can be read on my site, here: http://dxrevisionwatch.wordpress.com/dsm-5-proposals/dsm-5-submissions-2011/
ETA: There is a Word document here:
http://www.stonebird.co.uk/severemesubmission.doc
PERMISSION TO REPOST
25% ME Group & Stonebird
Submission re: DSM-V and ME/CFS
Greg Crowhurst July 12th 2011
(This joint submission is being made further to the previous submission by the 25% ME Group on 20th March 2010 re: DSM-V and ME/CFS)
"The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME".
Professor Peter White, response to Professor Malcolm Hooper.
http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm
Executive Summary:
The inappropriate involvement of psychiatry, particularly the Wessely
School, in ME in the UK, promoting a psychosocial agenda and even denying
the definition and existence of ME as a neurological disease, would make it
wrong for the DSM to validate CSSD and SSSD, until such time as ME is
properly recognised as a neurological disease with the development of proper
biomedical ME pathways and treatments established, to safe guard this
extremely vulnerable group.
Because of the disregard, shown by the Wessely School of the WHO
classification of ME as a neurological disease and its alternative term,
CFS, patients with Myalgic Encephalomyelitis currently have no safe pathways
through the UK Health Service.
They are likely to be quite wrongly treated as if they have a mental health
disorder.
Because the specific elements of DSM5 are so closely linked to the way ME
can be wrongly described by the Wessley school and because the term CFS has
been widely adopted in the UK to mean ME, a neurological disease, and
because CFS has been deliberately called a mental health disorder by the
Wessley school, patients with an assessment of CFS have been wrongly exposed
to psychiatric treatments and interpretations.
If the DSM validates CSSD and SSSD then patients with a current CFS
diagnosis in the UK will be further wronged by potentially changing this
diagnosis to these newly created somatoform categories. And a person with ME
is in great danger of being shifted from an appropriate neurological disease
categorization to a legitimate - but made up - category of mental health.
Because ME is currently so open to mental health misinterpretation, it would
make it even more likely that people with ME will be mistreated; the DSM
will have inadvertently given greater permission and validation for this to
happen.
CSSD and SSD, the Simple and Complex Somatic Symptom Disorder categories,
must not be given formal legitimacy, because they are profoundly unsafe for
people with ME.
1.Introduction
The 25% ME Group for the Severely Affected is a registered UK charity
representing people who are profoundly disabled by Myalgic Encephalomyelitis
(ME). Stonebird is a website dedicated to raising awareness of the lived
experience of Severe Myalgic Encephalomyelitis. This is our first joint
submission.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), strives to
create an empirically sound source of diagnostic information on which
clinicians can rely to plan treatments and predict outcome. We note that
"the formation of classes of disorders and the putative disorders within
those classes are developed primarily by committee in the DSM." Pileki et al
(2011).
Given how essential it is then, to identify non-theoretical or
non-scientific biases that may be corrupting the way that the DSM
conceptualises mental illness; we are greatly concerned about the
involvement in the DSM-V Somatic Symptom Disorder Work Group of Professor
Michael Sharpe, a member of the "Wessely School" (Hansard; Lords, 9th
December 1998:1013) and Francis Creed, because according to existing
evidence, they intend to ensure that ME, which is misnamed "CFS/ME" by the
Wessely School, will fall within the purview of the new category of CSSD,
because they wrongly assert that ME is a functional somatic syndrome (ie. a
mental disorder) (cf Hooper and Williams 2010)
2.The damaging influence of the Wessely School in the UK
For many years, the Wessely School, which has immense influence over
Government policy, has been aggressively promoting a conceptualization of
Myalgic Encephalomyelitis as a mental illness, a conceptualization that also
fits the needs of the medical insurance industry (cf. Pileki et al 2011).
ME patients, they assert, complain of physical symptoms that do not result
from underlying physical disease but are the consequence of abnormal illness
beliefs, and those abnormal beliefs are responsible for the perpetuation of
their perceived disability). (cf Hooper and Williams 2010)[ii]
The involvement of the medical and permanent health insurance industry, who
have a vested interest in ensuring that ME is regarded as a mental health
disorder, to enable it to be excluded from insurance cover[iii] has been
repeatedly raised in the House of Commons, including the 2006 Report of the
Gibson Inquiry and Members of the Scottish Parliament have written to Allied
Dunbar about their concerns over Michael Sharpe's suitability to give an
unbiased view when assessing people with ME; Sharpe has asked MSPs to
withdraw their statements to Allied Dunbar about him.[iv]
For almost two decades , the Wessely School , despite the failure of
scientific research to reveal any specific biological marker for any
psychiatric diagnostic category, has dismissed the international biomedical
evidence, over 5000 published papers, that ME is an organic (not
psychiatric) disorder through :
i. their repeated failure to distinguish between "chronic
fatigue" , a mental health disorder and ME, a neurological disease that
affects multiple systems of the body.
ii. their demonstrable bias that has resulted in the deliberate
suppression of the biomedical evidence on ME by UK medical journals, these
include: population choice bias; severity of illness bias (patients with a
mild form of an illness may not respond in the same way as those with a more
severe form); comparison choice; outcome choice bias; withdrawal bias; bias
introduced by inappropriate handling of withdrawals, drop-outs and protocol
violations; missing data bias; publication bias; moral bias; values bias;
printed word bias (when a study is overrated because of undue confidence);
prominent author bias (when the results of studies published by prominent
authors are overrated, including esteemed author bias and esteemed professor
bias); multicentre collaborative trials (when the results are overrated);
vested interest bias; cherished belief bias and empiricism bias [v]
iii. their selective manipulation of others' published papers (by
claiming other authors' findings support their own view when such is not the
case)
iv. their unscrupulous determination to "eradicate" ME by asserting
that it is nothing more than an "aberrant illness belief" and their tactics
of denial (for referenced evidence and illustrations of such tactics of
denial, see "The Mental Health Movement: Persecution of Patients" available
online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm and
"Consideration of Some Issues Relating to the Published Views of
Psychiatrists of the 'Wessely School' in relation to their belief about the
nature, cause and treatment of ME" at
http://www.meactionuk.org.uk/consideration.htm
v. their focusing on the single symptom of chronic "fatigue" in ME
and ignoring of other significant symptoms and signs, especially
cardiovascular, neurological and immunological .
vi. their deliberate dilution of the case description to include
any "medically unexplained" fatigue, ie. their obfuscation of the case
definition so that it specifically includes somatisation disorders (which
instantly greatly increases the numbers of patients with an alleged
diagnosis of "CFS/ME" who can be coerced into enrolling in the Wessely
School management regime); if those with ME are physically unable to
continue and have no option but to withdraw from these regimes, they
immediately risk losing their State benefits and their medical insurance
payments)
vii. their advice to Government that no tests should be performed on
those with ME to confirm the diagnosis (other than the most basic screening,
which is universally known to be normal in ME and will not show up the
complex dysfunction. These need highly specific ME tests and scans.)
viii. their advice to Government that the reported biomedical
abnormalities "should not deflect the clinician from the biopsychosocial
approach and should not focus attention towards a search for an 'organic'
cause" (ref: Joint Royal Colleges' Report on CFS, CR54, 1996)
ix. their influence and functioning in areas of medicine in which
they have no expertise: as psychiatrists, it follows that areas of complex
medical science such as immunology, vascular biology and muscle pathology
which underpin ME are not within their remit of expertise.
A direct comparison can be made between the situation of UK ME Patients and
that of the women who were persecuted under the 1486 treatise entitled The
Malleus Maleficarum (The Hammer Against Witches), written to assist in the
detection and persecution of witches; it is important to note how both
situations arise out of a fantasy story promulgated by those in power.
Dr John Soboro (2010) [vi] comments, "The DSM as a scientific text and
almost every diagnosis found within it suffer from the same sort of problem
as the concept of someone actually being a witch: Validity".
If you see ME patients, based upon their number of "medically unexplained
symptoms", as having a somatoform disorder, you have a method of
identification which is 100% reliable, in the context of the fantasy - but
not in the real world; it is a relative view which perpetuates as an
absolute view. It is simply not anchored in truth.
We believe that the Wessely School are engaged in a deliberate campaign to
negate ME all together; the extraordinary revelations of the recent PACE
Trial appear to confirm this.
3. The failure to operationally define ME
In a letter to the Lancet, Professor Peter White, the Lead Investigator,
stated that "The PACE trial paper refers to chronic fatigue syndrome (CFS)
which is operationally defined; it does not purport to be studying CFS/ME".
What can be inferred from a major study, supposedly for ME, yet excluding
it, only "operationally" defining "CFS" patients for the study? Why was "ME"
not operationally defined? Could it be because the intention to negate ME,
as a physical disease, has always been the Wessely School's intention?
Myalgic Encephalomyelitis (ME), has been classified by the World Health
Organisation (WHO) as a neurological disorder since 1969. Currently it is
listed in the International Classification of Diseases (ICD), chapter 6,
under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD,
the WHO approved the term "Chronic Fatigue Syndrome" (CFS) as a term by
which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3,
hence the composite term "ME/CFS" is often used to denote the disorder. A
synonymous term also sanctioned by the WHO is "postviral fatigue syndrome".
The WHO by affirming the CFS label, have inadvertently given the Wessely
School the power to misuse the name CFS, which the Wessely School have
wrongly equated with Chronic Fatigue, coded at Section F48 - a mental health
section, confusing practitioners specifically in the UK into thinking that
CFS and therefore ME, by association, is a mental health condition, rather
than the serious disease that it actually is.
It is this shifting of the use of the name into the mental health field that
has caused such havoc in the lives of genuinely physically ill ME patients.
In this light, when the WHO term "CFS" is used it can be considered another
name for ME, but when the Wessely School use the term CFS they mean
something completely different, they mean a mental health disorder, which
has no business being equated with ME. This is how the confusion has arisen
and where the danger lies in validating CSSD.
The PACE Trail by its failure to operationally define "CFS/ME" - defining
only "CFS", has, in effect, negated ME; apparently deliberately, rather than
scientifically, making it "unexplained".
4. The deliberate ambiguity of the term CFS
Because the boundaries have been moved and two separate conditions, one
physical and one mental health, have been wrongly equated under the same
name, there needs to be a formal separation and respect for "ME" and
psychiatrically-labelled "CFS". Until this difference is clarified and
medically honoured, people with ME will continue to be misinterpreted,
misrepresented and abused by the psychosocial method.
To do that, you have to accurately define "ME" and "CFS"; which the Wessely
School of psychiatrists refuses to do, presumably because of their apparent
agenda to reclassify ME , a neurological disease, as a mental health issue -
ultimately as CSSD, which appears to be at least a seven step process :
1. First they changed the name to CFS.
2. Then they mislabelled CFS as a mental health condition, as opposed
to the intention of the WHO for CFS to be another name for ME, a physical,
neurological disease.
3. Having empirically changed the meaning of CFS they saw ME patients
under the guise of the CFS label, which then had dual interpretation of
either a physical disease or a mental health disease.
4. Then they denied access to proper testing, by not advising and by
actively proscribing the tests that will show up the physical dysfunction in
ME and moved the treatment of ME into a mental health, therapy-led
framework, denying patient's physical, underlying disease process.
5. Then, as the PACE Trial so extraordinarily shows, they chose not to
formally define the disease "ME", in the biggest ever government funded
research programme, that was supposed to be for "CFS/ME".
6. They used the PACE Trial to validate their Oxford Criteria as an
operational definition of CFS, to give it more authenticity.
7. Finally, using only the term CFS but working, as Sharpe and Creed
appear to be doing, they are now seeking to have CFS formally defined as
CSSD; ultimately a clever way of invalidating a WHO classified neurological
disease, by deliberate exclusion and formally categorising a complete
fantasy.
The PACE Trial has made ME not only medically unexplained, but also
medically undefined; a steep slippery slope, away from the truth, with dire
implications. This is very serious.
If the DSM validates CSSD somatisation criteria for CFS in the UK, it
endangers patients with ME who are being wrongly labelled as having CFS and
already being wrongly treated, under the psychosocial model by CBT and GET;
fulfilling the Wessely School mission, but bringing about profound
suffering, denying patients access to proper biomedical care.
The Wessely School's strategy seems to be to ultimately negate ME as a
genuine disease through a deliberate policy of exclusion, characterised, as
the PACE Trial shows, by a refusal to define the disease.
ME is easily defined by the Canadian Criteria, however because the Wessely
School, which exercises such extraordinary international influence, does not
accept the Canadian Criteria, they do not give people with ME anywhere else
to go, because they have already taken over the ME Clinics in the UK;
offering inappropriate treatments, which are causing harm or just simply
excluding people with ME, through the Oxford Criteria, while pretending to
offer an ME service. It is not hard to see where the Wessely School is
heading with CFS.
5. Conclusion
While the term "CFS" is used instead of clearly identifying who has
neurological ME and who has psychiatric fatigue and who has an undiagnosed
illness or who has Post Viral Fatigue, then it is dangerous for the DSM to
uncritically allow Wessely School psychiatrists to label patients' illness
as "undefined" .
People with ME desperately want to be separated from CFS, but not to be
excluded from existence under a tragically wrong CSSD label. It is fine to
get rid of the hopelessly ambiguous term CFS, as long as ME is formally
acknowledged as a neurological disease and the people who are currently
labelled as having CFS are properly tested and diagnosed using the Canadian
Criteria and appropriate medical services are set up to meet their physical
needs.
Until this happens it is not safe to validate CSSD or SSSD because people
with ME are already wrongly included in the term CFS. CFS will then be
presumably placed and validated totally as a mental health disorder and
people with ME will have been utterly wronged and caught in the middle;
misdiagnosis and mistreatment is already happening but will be awarded, by
the DSM, formal justification.
The Wessely School have so compromised the current situation, that it would
be utterly wrong to consolidate their power base until this issue is
resolved, fairly, adequately, and honestly, with biomedical integrity and
they are held to account.
Appendix
Complex Somatic Symptom Disorder
(From the perspective of a Severe ME patient )
To meet criteria for CSSD, criteria A, B, and C are necessary.
Without adequate biomedical testing being available for people with ME,
these criteria are not justifiable or safe.
The symptoms of ME are absolutely physically debilitating and impact your
daily living from moment to moment. This can be so easily misinterpreted as
a "preoccupation" with your symptoms if you do not believe in a physical
cause for ME.
There is no safe diagnosis process currently for people with ME, because of
the direct influence of the psychosocial lobby . All these CSSD Criteria
will do is give them more power and authority to misinterpret ME and
endanger people's lives.
A. Somatic symptoms:
One or more somatic symptoms that are distressing and/or result in
significant disruption in daily life.
B. Excessive thoughts, feelings, and behaviours related to these somatic
symptoms or associated health concerns:
At least two of the following are required to meet this criterion:
(1) High level of health-related anxiety.
The informed patient has much to be concerned about, which could be
misinterpreted as anxiety, given the psychiatric mistreatment that already
exists within the current system.
The uninformed or unaware patient will approach the health system expecting
to be treated with respect, to be given the appropriate biomedical tests and
an accurate diagnosis. As the system continues to fundamentally fail them,
it would not be surprising if a person became genuinely and reasonably
anxious, for justifiable reasons.
Without a much needed biomedical pathway; the more likely a person could be
perceived as fitting these vague CSSD criteria, because they little or no
medical proof of their illness.
If you have neurological ME, it would be reasonable to have some level of
anxiety about how the system might abuse you where:
doctors can already choose whether they believe ME is a physical
disease or a mental health disorder,
a range of diagnostic criteria are used, including the extremely
vague and inappropriate Oxford Criteria,
ME is already perceived, quite wrongly, to be a Fatigue condition
rather than a neurological disease
the biomedical tests and treatments needed, to prove the physical
dysfunction, are proscribed by NICE and more specific tests are not
available on the NHS
While this ambiguity of definition and interpretation of ME symptoms exists,
it would be wrong to give psychiatrists more power to misdiagnose ME, under
Somatisation Disorder.
Anyone would be understandably anxious in a situation where they are not
being treated properly or biomedically.
(2) Disproportionate and persistent concerns about the medical seriousness
of one's symptoms.
When your physical health is impacting upon every aspect of your life, yet
you are being denied tests, treatments, respect, validity, to prove you are
physically ill, as is the case with ME, then you could easily be
misinterpreted as having "disproportionate and persistent concerns about the
medical seriousness of one's symptoms".
You will have persistent concerns all the time your symptoms go unrecognised
and untreated and yet continue to disable you, for decades on end. This
situation does not justify a mental health label; this criterion is
ridiculous within the current context of ME. In ME this would not be a
symptom of mental health dysfunction but of the system dysfunction that
fails to recognise and treat ME honourably.
Given there is so much misinformation in the medical world, about ME,
these criteria are dangerously open to the beliefs of the person making the
assessment; it is a lottery dependent solely on the beliefs underpinning
the views of the assessor as to how they will interpret ME. This is
unacceptable.
If you have Myalgic Encephalomyelitis, then you have a serious disease with
symptoms that are currently negated, neglected and denied because of the
influence of the psychiatric lobby and are not tested for adequately, using
appropriate, specific biomedical ME tests.
To only use these categories, to give a somatoform diagnosis is at best
nave and at worst a deliberate attempt to further mistreat people with ME.
(3) Excessive time and energy devoted to these symptoms or health concerns.*
A person with a physical illness which is chronic and disabling , which is
denied its truth ,which is covered up by a blanket of psychiatric fatigue
and where the first-line treatment offered is therapy described as
treatment, could so easily be wrongly interpreted as having CSSD.
While it remains optional, whether you view ME as a psychiatric disorder or
a physical disease, people with ME will be exposed to a great danger of
being wrongly diagnosed and having their human rights infringed. If these
criteria are validated by the DSM and are allowed to become a standard
interpretation of ME symptoms, the wrong interpretation of ME as a
psychiatric disorder will be further consolidated.
C. Chronicity: Although any one symptom may not be continuously present,
the state of being symptomatic is chronic (at least 6 months).
In ME symptoms are not necessarily continuously present and may vary in
degree and severity, making this category particularly dangerous and open to
misinterpretation, for the person with ME.
Linking CSSD with six months chronicity is a great concern, because that
happens to be the exact amount of time one needs to be ill, to receive an ME
diagnosis highlighting yet again the dangers for people with ME and the
risk of misinterpretation, which would be enhanced if this somatoform
disorder is allowed to be validated .
Given the dearth of biomedical consultants, with biomedical ME specialism
in the UK this categorization makes the diagnosis of ME, a neurological
disease, as even less likely in the future and endangers people with ME from
receiving a fair and adequate health service.
For patients who fulfill the CSSD criteria, the following optional
specifiers may be applied to a diagnosis of CSSD where one of the following
dominates the clinical presentation:
XXX.1 Predominant somatic complaints (previously, somatization
disorder)
The Wessely School, quite wrongly, considers ME to be a somatoform disorder,
despite ME being a WHO classified, physical neurological disease, with
multi-system dysfunction.
Anyone who has ME in the UK, who sees a Wessely School -influenced clinician
or therapist , is likely to be given a mental health label , therefore this
criteria is extremely concerning ; it raises the question of how CSSD can
be safely applied to anybody and how the DSM can ensure that patients with
ME are not misdiagnosed and mistreated.
XXX.2 Predominant health anxiety (previously, hypochondriasis). If
patients present solely with health-related anxiety with minimal somatic
symptoms, they may be more appropriately diagnosed as having Illness Anxiety
Disorder.
Without proper physical testing , alongside the powerful influence of the
psychiatric lobby in the way ME can be regarded and treated as a mental
health disorder, associated with wrong thought belief, this criteria gives
greater validation and power to those misinterpreting patients with ME, as
having an anxiety disorder.
Without the safeguard of proper biomedical ME tests and treatments,
separating ME from Chronic Fatigue states, people with ME are in danger of
being psychiatrically abused , with the blessing of the DSM.
XXX.3 Predominant Pain (previously pain disorder). This
classification is reserved for individuals presenting predominantly with
pain complaints who also have many of the features described under criterion
B. Patients with other presentations of pain may better fit other
psychiatric diagnoses such as adjustment disorder or psychological factors
affecting a medical condition.
The psychiatric view in CSSD appears to be that certain physical pain is not
valid, unless medically explained; "medically unexplained" is open to
interpretation.
In ME, there is complex system dysfunction and patients experience severe
levels of pain that in many people is completely uncontrollable by current
pain medication.
Patients are often too drug sensitive to tolerate the drugs themselves and
may experience drastic side-effects, as a result of their multi-system
dysfunction. However, without satisfactory biomedical testing and practices
in the UK, patients with ME have little or no medical proof of the cause of
their pain.
This does not mean their pain is not real, this does not mean it is not
physically caused, it does not mean it is a psychological, it does not mean
it is caused by wrong thoughts and beliefs; it means the NHS and the
Government have not undertaken the commitment required to develop new tests
and treatments based on proper and adequate biomedical research.
This leaves the door wide open, wrongly and frighteningly for the Wessely
School of psychiatry to enter and use these bizarre and vague somatoform
criteria to assert that the person has a somatic disorder, rather than the
physical disease they actually have.
Given the disrespect shown to the WHO classification of both ME and CFS as
neurological by the Wessely School alongside their refusal to even
operationally define ME, then anyone with genuine ME, who is referred by a
unaware physician to a psychosocial psychiatrist or therapist or other
clinician, with a psychosocial understanding of ME , will not be considered
to have a physical disease ; despite actually having one.
A diagnosis of ME will not be an option for these people: if a patient comes
with
numerous symptoms that do not show up dysfunction on the standard
NHS tests;
a concern about their health and the overwhelming nature of the
symptoms that stop them from interacting in everyday life
an anxiety about their being able to sustain their jobs , careers,
their social life, financial status, etc
a worry that their tests are not showing anything up, with pain
that can so easily be interpreted as psychological, by the practitioner,
they are likely to end up being mistreated by psychiatry and labelled as
having a somatoform disorder according to these dangerous criteria.
This is the danger of wrongly associating a neurological physically
disabling disease with psychiatry and completely, deliberately
misinterpreting it as a mental health issue.
On this basis it would be a violation of human rights to validate these CSSD
criteria, given the long-standing agenda of the Wessely School to deny ME as
a physical disease and give it no opportunity to be properly tested and
aided, biomedically.
Conclusion:
These criteria will further strengthen the misinterpretation of the symptoms
of ME as a mental health disorder.
Just because the NHS, in the UK, has not developed proper testing or will
not pay for the more expensive tests that can show up the underlying
possible causes of ME , it is extremely dangerous to then make the jump to
say that patients should be considered as either having psychological
difficulties or an adjustment disorder.
On the basis of these minimal criteria, anyone newly ill with ME, going to
an uninformed clinician is likely to be given a somatoform misinterpretation
or be referred down a psychiatric pathway, away from the truth of their
physical disease and exposed to potentially abusive treatments that deny
their physical reality.
The category of CSSD could become a reason to openly abuse patients with
ME.
CSSD is like a golden pass for the psychiatric lobby to block anyone from
even receiving an ME diagnosis in the first place. Given the NHS does not
offer the specific ME tests required to identify dysfunction, it is
potentially a green flag to a mass abuse of people with a physical disease
_____
Hooper M & Williams M (2010) Submission re: DSM-V and ME/CFS, 25% Group
http://www.meactionuk.org.uk/DSM-V-submission.htm
[ii] Hooper M & Williams M (2010) Submission re: DSM-V and ME/CFS, 25% Group
http://www.meactionuk.org.uk/DSM-V-submission.htm
[iii] http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf).
[iv] Hooper M (2011) REPORT: COMPLAINT TO THE RELEVANT EXECUTIVE EDITOR OF
THE LANCET ABOUT THE PACE TRIAL ARTICLES PUBLISHED BY THE LANCET
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm
[v] Random Controlled Trials. A Jadad & M Elkin; Oxford, Blackwell 2007;
first published in 1998.
[vi]JOHN SORBORO, M.D.(2010) Prognosis Negative
Psychiatry and the Foibles of the Diagnostic and
Statistical Manual V (DSM-V) , Skeptic Magazine volume 15 number 3
2010http://www.psychiatry.freeuk.com/SorboroDSM.pdf
25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT
Web: www.25megroup.org
Email: enquiry@25megroup.org
The following submission has been released today by the 25% ME Group (UK).
The Medical Advisers to the 25% ME Group are Dr Nigel Speight and Dr Byron Hyde. I cannot confirm whether either has submitted a letter of concern. An alert for the DSM-5 second stakeholder review and key documents were sent to Dr Hyde by me on June 1, but no response has been received.
Both the 25% ME Group and Invest in ME submitted last year. It is not known whether Invest in ME has submitted this year, but they are members of EMEA (http://www.euro-me.org/UK IiME.htm) which has submitted a response, a copy of which can be read on my site, here: http://dxrevisionwatch.wordpress.com/dsm-5-proposals/dsm-5-submissions-2011/
ETA: There is a Word document here:
http://www.stonebird.co.uk/severemesubmission.doc
PERMISSION TO REPOST
25% ME Group & Stonebird
Submission re: DSM-V and ME/CFS
Greg Crowhurst July 12th 2011
(This joint submission is being made further to the previous submission by the 25% ME Group on 20th March 2010 re: DSM-V and ME/CFS)
"The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME".
Professor Peter White, response to Professor Malcolm Hooper.
http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW-letter.htm
Executive Summary:
The inappropriate involvement of psychiatry, particularly the Wessely
School, in ME in the UK, promoting a psychosocial agenda and even denying
the definition and existence of ME as a neurological disease, would make it
wrong for the DSM to validate CSSD and SSSD, until such time as ME is
properly recognised as a neurological disease with the development of proper
biomedical ME pathways and treatments established, to safe guard this
extremely vulnerable group.
Because of the disregard, shown by the Wessely School of the WHO
classification of ME as a neurological disease and its alternative term,
CFS, patients with Myalgic Encephalomyelitis currently have no safe pathways
through the UK Health Service.
They are likely to be quite wrongly treated as if they have a mental health
disorder.
Because the specific elements of DSM5 are so closely linked to the way ME
can be wrongly described by the Wessley school and because the term CFS has
been widely adopted in the UK to mean ME, a neurological disease, and
because CFS has been deliberately called a mental health disorder by the
Wessley school, patients with an assessment of CFS have been wrongly exposed
to psychiatric treatments and interpretations.
If the DSM validates CSSD and SSSD then patients with a current CFS
diagnosis in the UK will be further wronged by potentially changing this
diagnosis to these newly created somatoform categories. And a person with ME
is in great danger of being shifted from an appropriate neurological disease
categorization to a legitimate - but made up - category of mental health.
Because ME is currently so open to mental health misinterpretation, it would
make it even more likely that people with ME will be mistreated; the DSM
will have inadvertently given greater permission and validation for this to
happen.
CSSD and SSD, the Simple and Complex Somatic Symptom Disorder categories,
must not be given formal legitimacy, because they are profoundly unsafe for
people with ME.
1.Introduction
The 25% ME Group for the Severely Affected is a registered UK charity
representing people who are profoundly disabled by Myalgic Encephalomyelitis
(ME). Stonebird is a website dedicated to raising awareness of the lived
experience of Severe Myalgic Encephalomyelitis. This is our first joint
submission.
The Diagnostic and Statistical Manual of Mental Disorders (DSM), strives to
create an empirically sound source of diagnostic information on which
clinicians can rely to plan treatments and predict outcome. We note that
"the formation of classes of disorders and the putative disorders within
those classes are developed primarily by committee in the DSM." Pileki et al
(2011).
Given how essential it is then, to identify non-theoretical or
non-scientific biases that may be corrupting the way that the DSM
conceptualises mental illness; we are greatly concerned about the
involvement in the DSM-V Somatic Symptom Disorder Work Group of Professor
Michael Sharpe, a member of the "Wessely School" (Hansard; Lords, 9th
December 1998:1013) and Francis Creed, because according to existing
evidence, they intend to ensure that ME, which is misnamed "CFS/ME" by the
Wessely School, will fall within the purview of the new category of CSSD,
because they wrongly assert that ME is a functional somatic syndrome (ie. a
mental disorder) (cf Hooper and Williams 2010)
2.The damaging influence of the Wessely School in the UK
For many years, the Wessely School, which has immense influence over
Government policy, has been aggressively promoting a conceptualization of
Myalgic Encephalomyelitis as a mental illness, a conceptualization that also
fits the needs of the medical insurance industry (cf. Pileki et al 2011).
ME patients, they assert, complain of physical symptoms that do not result
from underlying physical disease but are the consequence of abnormal illness
beliefs, and those abnormal beliefs are responsible for the perpetuation of
their perceived disability). (cf Hooper and Williams 2010)[ii]
The involvement of the medical and permanent health insurance industry, who
have a vested interest in ensuring that ME is regarded as a mental health
disorder, to enable it to be excluded from insurance cover[iii] has been
repeatedly raised in the House of Commons, including the 2006 Report of the
Gibson Inquiry and Members of the Scottish Parliament have written to Allied
Dunbar about their concerns over Michael Sharpe's suitability to give an
unbiased view when assessing people with ME; Sharpe has asked MSPs to
withdraw their statements to Allied Dunbar about him.[iv]
For almost two decades , the Wessely School , despite the failure of
scientific research to reveal any specific biological marker for any
psychiatric diagnostic category, has dismissed the international biomedical
evidence, over 5000 published papers, that ME is an organic (not
psychiatric) disorder through :
i. their repeated failure to distinguish between "chronic
fatigue" , a mental health disorder and ME, a neurological disease that
affects multiple systems of the body.
ii. their demonstrable bias that has resulted in the deliberate
suppression of the biomedical evidence on ME by UK medical journals, these
include: population choice bias; severity of illness bias (patients with a
mild form of an illness may not respond in the same way as those with a more
severe form); comparison choice; outcome choice bias; withdrawal bias; bias
introduced by inappropriate handling of withdrawals, drop-outs and protocol
violations; missing data bias; publication bias; moral bias; values bias;
printed word bias (when a study is overrated because of undue confidence);
prominent author bias (when the results of studies published by prominent
authors are overrated, including esteemed author bias and esteemed professor
bias); multicentre collaborative trials (when the results are overrated);
vested interest bias; cherished belief bias and empiricism bias [v]
iii. their selective manipulation of others' published papers (by
claiming other authors' findings support their own view when such is not the
case)
iv. their unscrupulous determination to "eradicate" ME by asserting
that it is nothing more than an "aberrant illness belief" and their tactics
of denial (for referenced evidence and illustrations of such tactics of
denial, see "The Mental Health Movement: Persecution of Patients" available
online at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm and
"Consideration of Some Issues Relating to the Published Views of
Psychiatrists of the 'Wessely School' in relation to their belief about the
nature, cause and treatment of ME" at
http://www.meactionuk.org.uk/consideration.htm
v. their focusing on the single symptom of chronic "fatigue" in ME
and ignoring of other significant symptoms and signs, especially
cardiovascular, neurological and immunological .
vi. their deliberate dilution of the case description to include
any "medically unexplained" fatigue, ie. their obfuscation of the case
definition so that it specifically includes somatisation disorders (which
instantly greatly increases the numbers of patients with an alleged
diagnosis of "CFS/ME" who can be coerced into enrolling in the Wessely
School management regime); if those with ME are physically unable to
continue and have no option but to withdraw from these regimes, they
immediately risk losing their State benefits and their medical insurance
payments)
vii. their advice to Government that no tests should be performed on
those with ME to confirm the diagnosis (other than the most basic screening,
which is universally known to be normal in ME and will not show up the
complex dysfunction. These need highly specific ME tests and scans.)
viii. their advice to Government that the reported biomedical
abnormalities "should not deflect the clinician from the biopsychosocial
approach and should not focus attention towards a search for an 'organic'
cause" (ref: Joint Royal Colleges' Report on CFS, CR54, 1996)
ix. their influence and functioning in areas of medicine in which
they have no expertise: as psychiatrists, it follows that areas of complex
medical science such as immunology, vascular biology and muscle pathology
which underpin ME are not within their remit of expertise.
A direct comparison can be made between the situation of UK ME Patients and
that of the women who were persecuted under the 1486 treatise entitled The
Malleus Maleficarum (The Hammer Against Witches), written to assist in the
detection and persecution of witches; it is important to note how both
situations arise out of a fantasy story promulgated by those in power.
Dr John Soboro (2010) [vi] comments, "The DSM as a scientific text and
almost every diagnosis found within it suffer from the same sort of problem
as the concept of someone actually being a witch: Validity".
If you see ME patients, based upon their number of "medically unexplained
symptoms", as having a somatoform disorder, you have a method of
identification which is 100% reliable, in the context of the fantasy - but
not in the real world; it is a relative view which perpetuates as an
absolute view. It is simply not anchored in truth.
We believe that the Wessely School are engaged in a deliberate campaign to
negate ME all together; the extraordinary revelations of the recent PACE
Trial appear to confirm this.
3. The failure to operationally define ME
In a letter to the Lancet, Professor Peter White, the Lead Investigator,
stated that "The PACE trial paper refers to chronic fatigue syndrome (CFS)
which is operationally defined; it does not purport to be studying CFS/ME".
What can be inferred from a major study, supposedly for ME, yet excluding
it, only "operationally" defining "CFS" patients for the study? Why was "ME"
not operationally defined? Could it be because the intention to negate ME,
as a physical disease, has always been the Wessely School's intention?
Myalgic Encephalomyelitis (ME), has been classified by the World Health
Organisation (WHO) as a neurological disorder since 1969. Currently it is
listed in the International Classification of Diseases (ICD), chapter 6,
under Disorders of Brain at ICD-10 G 93.3. In the 1992 revision of the ICD,
the WHO approved the term "Chronic Fatigue Syndrome" (CFS) as a term by
which ME may be known. The term CFS is coded only to ME at ICD-10 G93.3,
hence the composite term "ME/CFS" is often used to denote the disorder. A
synonymous term also sanctioned by the WHO is "postviral fatigue syndrome".
The WHO by affirming the CFS label, have inadvertently given the Wessely
School the power to misuse the name CFS, which the Wessely School have
wrongly equated with Chronic Fatigue, coded at Section F48 - a mental health
section, confusing practitioners specifically in the UK into thinking that
CFS and therefore ME, by association, is a mental health condition, rather
than the serious disease that it actually is.
It is this shifting of the use of the name into the mental health field that
has caused such havoc in the lives of genuinely physically ill ME patients.
In this light, when the WHO term "CFS" is used it can be considered another
name for ME, but when the Wessely School use the term CFS they mean
something completely different, they mean a mental health disorder, which
has no business being equated with ME. This is how the confusion has arisen
and where the danger lies in validating CSSD.
The PACE Trail by its failure to operationally define "CFS/ME" - defining
only "CFS", has, in effect, negated ME; apparently deliberately, rather than
scientifically, making it "unexplained".
4. The deliberate ambiguity of the term CFS
Because the boundaries have been moved and two separate conditions, one
physical and one mental health, have been wrongly equated under the same
name, there needs to be a formal separation and respect for "ME" and
psychiatrically-labelled "CFS". Until this difference is clarified and
medically honoured, people with ME will continue to be misinterpreted,
misrepresented and abused by the psychosocial method.
To do that, you have to accurately define "ME" and "CFS"; which the Wessely
School of psychiatrists refuses to do, presumably because of their apparent
agenda to reclassify ME , a neurological disease, as a mental health issue -
ultimately as CSSD, which appears to be at least a seven step process :
1. First they changed the name to CFS.
2. Then they mislabelled CFS as a mental health condition, as opposed
to the intention of the WHO for CFS to be another name for ME, a physical,
neurological disease.
3. Having empirically changed the meaning of CFS they saw ME patients
under the guise of the CFS label, which then had dual interpretation of
either a physical disease or a mental health disease.
4. Then they denied access to proper testing, by not advising and by
actively proscribing the tests that will show up the physical dysfunction in
ME and moved the treatment of ME into a mental health, therapy-led
framework, denying patient's physical, underlying disease process.
5. Then, as the PACE Trial so extraordinarily shows, they chose not to
formally define the disease "ME", in the biggest ever government funded
research programme, that was supposed to be for "CFS/ME".
6. They used the PACE Trial to validate their Oxford Criteria as an
operational definition of CFS, to give it more authenticity.
7. Finally, using only the term CFS but working, as Sharpe and Creed
appear to be doing, they are now seeking to have CFS formally defined as
CSSD; ultimately a clever way of invalidating a WHO classified neurological
disease, by deliberate exclusion and formally categorising a complete
fantasy.
The PACE Trial has made ME not only medically unexplained, but also
medically undefined; a steep slippery slope, away from the truth, with dire
implications. This is very serious.
If the DSM validates CSSD somatisation criteria for CFS in the UK, it
endangers patients with ME who are being wrongly labelled as having CFS and
already being wrongly treated, under the psychosocial model by CBT and GET;
fulfilling the Wessely School mission, but bringing about profound
suffering, denying patients access to proper biomedical care.
The Wessely School's strategy seems to be to ultimately negate ME as a
genuine disease through a deliberate policy of exclusion, characterised, as
the PACE Trial shows, by a refusal to define the disease.
ME is easily defined by the Canadian Criteria, however because the Wessely
School, which exercises such extraordinary international influence, does not
accept the Canadian Criteria, they do not give people with ME anywhere else
to go, because they have already taken over the ME Clinics in the UK;
offering inappropriate treatments, which are causing harm or just simply
excluding people with ME, through the Oxford Criteria, while pretending to
offer an ME service. It is not hard to see where the Wessely School is
heading with CFS.
5. Conclusion
While the term "CFS" is used instead of clearly identifying who has
neurological ME and who has psychiatric fatigue and who has an undiagnosed
illness or who has Post Viral Fatigue, then it is dangerous for the DSM to
uncritically allow Wessely School psychiatrists to label patients' illness
as "undefined" .
People with ME desperately want to be separated from CFS, but not to be
excluded from existence under a tragically wrong CSSD label. It is fine to
get rid of the hopelessly ambiguous term CFS, as long as ME is formally
acknowledged as a neurological disease and the people who are currently
labelled as having CFS are properly tested and diagnosed using the Canadian
Criteria and appropriate medical services are set up to meet their physical
needs.
Until this happens it is not safe to validate CSSD or SSSD because people
with ME are already wrongly included in the term CFS. CFS will then be
presumably placed and validated totally as a mental health disorder and
people with ME will have been utterly wronged and caught in the middle;
misdiagnosis and mistreatment is already happening but will be awarded, by
the DSM, formal justification.
The Wessely School have so compromised the current situation, that it would
be utterly wrong to consolidate their power base until this issue is
resolved, fairly, adequately, and honestly, with biomedical integrity and
they are held to account.
Appendix
Complex Somatic Symptom Disorder
(From the perspective of a Severe ME patient )
To meet criteria for CSSD, criteria A, B, and C are necessary.
Without adequate biomedical testing being available for people with ME,
these criteria are not justifiable or safe.
The symptoms of ME are absolutely physically debilitating and impact your
daily living from moment to moment. This can be so easily misinterpreted as
a "preoccupation" with your symptoms if you do not believe in a physical
cause for ME.
There is no safe diagnosis process currently for people with ME, because of
the direct influence of the psychosocial lobby . All these CSSD Criteria
will do is give them more power and authority to misinterpret ME and
endanger people's lives.
A. Somatic symptoms:
One or more somatic symptoms that are distressing and/or result in
significant disruption in daily life.
B. Excessive thoughts, feelings, and behaviours related to these somatic
symptoms or associated health concerns:
At least two of the following are required to meet this criterion:
(1) High level of health-related anxiety.
The informed patient has much to be concerned about, which could be
misinterpreted as anxiety, given the psychiatric mistreatment that already
exists within the current system.
The uninformed or unaware patient will approach the health system expecting
to be treated with respect, to be given the appropriate biomedical tests and
an accurate diagnosis. As the system continues to fundamentally fail them,
it would not be surprising if a person became genuinely and reasonably
anxious, for justifiable reasons.
Without a much needed biomedical pathway; the more likely a person could be
perceived as fitting these vague CSSD criteria, because they little or no
medical proof of their illness.
If you have neurological ME, it would be reasonable to have some level of
anxiety about how the system might abuse you where:
doctors can already choose whether they believe ME is a physical
disease or a mental health disorder,
a range of diagnostic criteria are used, including the extremely
vague and inappropriate Oxford Criteria,
ME is already perceived, quite wrongly, to be a Fatigue condition
rather than a neurological disease
the biomedical tests and treatments needed, to prove the physical
dysfunction, are proscribed by NICE and more specific tests are not
available on the NHS
While this ambiguity of definition and interpretation of ME symptoms exists,
it would be wrong to give psychiatrists more power to misdiagnose ME, under
Somatisation Disorder.
Anyone would be understandably anxious in a situation where they are not
being treated properly or biomedically.
(2) Disproportionate and persistent concerns about the medical seriousness
of one's symptoms.
When your physical health is impacting upon every aspect of your life, yet
you are being denied tests, treatments, respect, validity, to prove you are
physically ill, as is the case with ME, then you could easily be
misinterpreted as having "disproportionate and persistent concerns about the
medical seriousness of one's symptoms".
You will have persistent concerns all the time your symptoms go unrecognised
and untreated and yet continue to disable you, for decades on end. This
situation does not justify a mental health label; this criterion is
ridiculous within the current context of ME. In ME this would not be a
symptom of mental health dysfunction but of the system dysfunction that
fails to recognise and treat ME honourably.
Given there is so much misinformation in the medical world, about ME,
these criteria are dangerously open to the beliefs of the person making the
assessment; it is a lottery dependent solely on the beliefs underpinning
the views of the assessor as to how they will interpret ME. This is
unacceptable.
If you have Myalgic Encephalomyelitis, then you have a serious disease with
symptoms that are currently negated, neglected and denied because of the
influence of the psychiatric lobby and are not tested for adequately, using
appropriate, specific biomedical ME tests.
To only use these categories, to give a somatoform diagnosis is at best
nave and at worst a deliberate attempt to further mistreat people with ME.
(3) Excessive time and energy devoted to these symptoms or health concerns.*
A person with a physical illness which is chronic and disabling , which is
denied its truth ,which is covered up by a blanket of psychiatric fatigue
and where the first-line treatment offered is therapy described as
treatment, could so easily be wrongly interpreted as having CSSD.
While it remains optional, whether you view ME as a psychiatric disorder or
a physical disease, people with ME will be exposed to a great danger of
being wrongly diagnosed and having their human rights infringed. If these
criteria are validated by the DSM and are allowed to become a standard
interpretation of ME symptoms, the wrong interpretation of ME as a
psychiatric disorder will be further consolidated.
C. Chronicity: Although any one symptom may not be continuously present,
the state of being symptomatic is chronic (at least 6 months).
In ME symptoms are not necessarily continuously present and may vary in
degree and severity, making this category particularly dangerous and open to
misinterpretation, for the person with ME.
Linking CSSD with six months chronicity is a great concern, because that
happens to be the exact amount of time one needs to be ill, to receive an ME
diagnosis highlighting yet again the dangers for people with ME and the
risk of misinterpretation, which would be enhanced if this somatoform
disorder is allowed to be validated .
Given the dearth of biomedical consultants, with biomedical ME specialism
in the UK this categorization makes the diagnosis of ME, a neurological
disease, as even less likely in the future and endangers people with ME from
receiving a fair and adequate health service.
For patients who fulfill the CSSD criteria, the following optional
specifiers may be applied to a diagnosis of CSSD where one of the following
dominates the clinical presentation:
XXX.1 Predominant somatic complaints (previously, somatization
disorder)
The Wessely School, quite wrongly, considers ME to be a somatoform disorder,
despite ME being a WHO classified, physical neurological disease, with
multi-system dysfunction.
Anyone who has ME in the UK, who sees a Wessely School -influenced clinician
or therapist , is likely to be given a mental health label , therefore this
criteria is extremely concerning ; it raises the question of how CSSD can
be safely applied to anybody and how the DSM can ensure that patients with
ME are not misdiagnosed and mistreated.
XXX.2 Predominant health anxiety (previously, hypochondriasis). If
patients present solely with health-related anxiety with minimal somatic
symptoms, they may be more appropriately diagnosed as having Illness Anxiety
Disorder.
Without proper physical testing , alongside the powerful influence of the
psychiatric lobby in the way ME can be regarded and treated as a mental
health disorder, associated with wrong thought belief, this criteria gives
greater validation and power to those misinterpreting patients with ME, as
having an anxiety disorder.
Without the safeguard of proper biomedical ME tests and treatments,
separating ME from Chronic Fatigue states, people with ME are in danger of
being psychiatrically abused , with the blessing of the DSM.
XXX.3 Predominant Pain (previously pain disorder). This
classification is reserved for individuals presenting predominantly with
pain complaints who also have many of the features described under criterion
B. Patients with other presentations of pain may better fit other
psychiatric diagnoses such as adjustment disorder or psychological factors
affecting a medical condition.
The psychiatric view in CSSD appears to be that certain physical pain is not
valid, unless medically explained; "medically unexplained" is open to
interpretation.
In ME, there is complex system dysfunction and patients experience severe
levels of pain that in many people is completely uncontrollable by current
pain medication.
Patients are often too drug sensitive to tolerate the drugs themselves and
may experience drastic side-effects, as a result of their multi-system
dysfunction. However, without satisfactory biomedical testing and practices
in the UK, patients with ME have little or no medical proof of the cause of
their pain.
This does not mean their pain is not real, this does not mean it is not
physically caused, it does not mean it is a psychological, it does not mean
it is caused by wrong thoughts and beliefs; it means the NHS and the
Government have not undertaken the commitment required to develop new tests
and treatments based on proper and adequate biomedical research.
This leaves the door wide open, wrongly and frighteningly for the Wessely
School of psychiatry to enter and use these bizarre and vague somatoform
criteria to assert that the person has a somatic disorder, rather than the
physical disease they actually have.
Given the disrespect shown to the WHO classification of both ME and CFS as
neurological by the Wessely School alongside their refusal to even
operationally define ME, then anyone with genuine ME, who is referred by a
unaware physician to a psychosocial psychiatrist or therapist or other
clinician, with a psychosocial understanding of ME , will not be considered
to have a physical disease ; despite actually having one.
A diagnosis of ME will not be an option for these people: if a patient comes
with
numerous symptoms that do not show up dysfunction on the standard
NHS tests;
a concern about their health and the overwhelming nature of the
symptoms that stop them from interacting in everyday life
an anxiety about their being able to sustain their jobs , careers,
their social life, financial status, etc
a worry that their tests are not showing anything up, with pain
that can so easily be interpreted as psychological, by the practitioner,
they are likely to end up being mistreated by psychiatry and labelled as
having a somatoform disorder according to these dangerous criteria.
This is the danger of wrongly associating a neurological physically
disabling disease with psychiatry and completely, deliberately
misinterpreting it as a mental health issue.
On this basis it would be a violation of human rights to validate these CSSD
criteria, given the long-standing agenda of the Wessely School to deny ME as
a physical disease and give it no opportunity to be properly tested and
aided, biomedically.
Conclusion:
These criteria will further strengthen the misinterpretation of the symptoms
of ME as a mental health disorder.
Just because the NHS, in the UK, has not developed proper testing or will
not pay for the more expensive tests that can show up the underlying
possible causes of ME , it is extremely dangerous to then make the jump to
say that patients should be considered as either having psychological
difficulties or an adjustment disorder.
On the basis of these minimal criteria, anyone newly ill with ME, going to
an uninformed clinician is likely to be given a somatoform misinterpretation
or be referred down a psychiatric pathway, away from the truth of their
physical disease and exposed to potentially abusive treatments that deny
their physical reality.
The category of CSSD could become a reason to openly abuse patients with
ME.
CSSD is like a golden pass for the psychiatric lobby to block anyone from
even receiving an ME diagnosis in the first place. Given the NHS does not
offer the specific ME tests required to identify dysfunction, it is
potentially a green flag to a mass abuse of people with a physical disease
_____
Hooper M & Williams M (2010) Submission re: DSM-V and ME/CFS, 25% Group
http://www.meactionuk.org.uk/DSM-V-submission.htm
[ii] Hooper M & Williams M (2010) Submission re: DSM-V and ME/CFS, 25% Group
http://www.meactionuk.org.uk/DSM-V-submission.htm
[iii] http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf).
[iv] Hooper M (2011) REPORT: COMPLAINT TO THE RELEVANT EXECUTIVE EDITOR OF
THE LANCET ABOUT THE PACE TRIAL ARTICLES PUBLISHED BY THE LANCET
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm
[v] Random Controlled Trials. A Jadad & M Elkin; Oxford, Blackwell 2007;
first published in 1998.
[vi]JOHN SORBORO, M.D.(2010) Prognosis Negative
Psychiatry and the Foibles of the Diagnostic and
Statistical Manual V (DSM-V) , Skeptic Magazine volume 15 number 3
2010http://www.psychiatry.freeuk.com/SorboroDSM.pdf
25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT
Web: www.25megroup.org
Email: enquiry@25megroup.org
Mary, have you registered to comment?
If not, register first via the registration link at the top of the right hand side of pages.
You will be sent an auto generated password to the email address you registered in.
Sign in with your username and password.
When signed in, go to the CSSD page:
http://tinyurl.com/DSM-5-CSSD
When signed in, the comment box should be displaying at the foot of the page.
If it won't display in Internet Explorer and you have Firefox or another browser, log in with the other browser and try again.
If when you are signed in you still cannot see the WYSIWYG editor email me at me.agenda@virgin.net and I will upload your submission on your behalf. I will be around until about 10.30pm UK time.
Suzy
If not, register first via the registration link at the top of the right hand side of pages.
You will be sent an auto generated password to the email address you registered in.
Sign in with your username and password.
When signed in, go to the CSSD page:
http://tinyurl.com/DSM-5-CSSD
When signed in, the comment box should be displaying at the foot of the page.
If it won't display in Internet Explorer and you have Firefox or another browser, log in with the other browser and try again.
If when you are signed in you still cannot see the WYSIWYG editor email me at me.agenda@virgin.net and I will upload your submission on your behalf. I will be around until about 10.30pm UK time.
Suzy
Can anyone help I cannot get the comment box to come up to post a comment in, I am on the right page but no box, have tried 50 times and am tired
The RT editor doesn't seem to work in Internet Explorer - try working from Firefox which by default loads a plain text editor.
IVI
I composed my submissions in RT draft emails and was able to paste them directly into the editor using IE8. The formatting and para spacing was retained but I know some folk have had problems with some versions of IE.
I think Mary's problem is that she could not get the comment box to display but she has not clarified yet whether she is signed in.
I think Mary's problem is that she could not get the comment box to display but she has not clarified yet whether she is signed in.
Mary, I have just signed in myself and the comment box is not displaying for me either in IE8 - though was fine on when I last signed in on June 15.
So it's most likely the fault of the website and not your browser.
I will check FF4, now, but and will email you if I can get a box up in FF4.
Suzy
Important notice from DSM-5 Development
http://www.dsm5.org/Pages/Default.aspx
Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.
http://www.dsm5.org/Pages/Default.aspx
Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.
Press release: The Bias in Psychiatric Diagnosis website
FOR IMMEDIATE RELEASE
BIAS IN PSYCHIATRIC DIAGNOSIS WEBSITE EXPOSES PROBLEMS WITH NEW DSM-5
July 13, 2011 The Bias in Psychiatric Diagnosis website
(http://awpsych.org/index.php?option=com_content&view=article&id=102&Itemid=126)
was recently updated to highlight a myriad of concerns about the upcoming 5th edition of the Diagnostic and Statistical Manual (DSM-5) that is scheduled to be released in 2013.
Published by the American Psychiatric Association, the DSM-5 is a reference text used to diagnose what its authors choose to label mental disorders; however, numerous individuals, including three editors of previous DSM editions, and professional organizations, including the Association for Women in Psychology and the American Counseling Association, have expressed misgivings about the ethics, science, implications and processes involved with the new manual development.
Paula J. Caplan, clinical psychologist, researcher at Harvard University and author of They Say Youre Crazy: How the Worlds Most Powerful Psychiatrists Decide Whos Normal, chairs the committee of academics, researchers and clinicians who updated the Association for Women in Psychology Bias in Psychiatric Diagnosis website. The updated web site provides information for mental health professionals, journalists and other interested individuals about newly proposed diagnostic categories and problems with psychiatric diagnosis.
The website hosts a collection of materials that provide evidence of discrimination, lack of empirical evidence and critiques of the DSM-5 manual preparation process. Articles on the site highlight newly proposed diagnoses, such as obesity and female sexual dysfunction, that are under-researched, have limited empirical support, and are politically motivated or based on methodologically weak studies. There is concern that the medicalization of normal, everyday or socially-created problems will falsely inflate the rates of mental disorders.
Some of the newly proposed diagnoses may have detrimental social and legal consequences. Parental Alienation Syndrome could serve to defend parents accused of sexual abuse. Paraphilic Coercive Disorder can constitute a virtually automatic ground for a reduced sentence for rapists without taking into consideration a sociocultural environment that perpetuates violence. Premenstrual Dysphoric Disorder, which has far-reaching sociopolitical consequences and little empirical evidence, pathologizes womens natural human experience and has not been shown by well-done research to be a valid entity.
Several psychiatric diagnoses may be more related to social marginalization, poverty and discrimination than individual pathology; however, individuals are labeled with little regard to circumstance. Biological and medical factors are being overemphasized while political, social, cultural and systemic issues are being minimized or ignored, despite the bulk of social science research that substantiates the magnitude of contextual factors.
The Bias in Psychiatric website includes articles, related references, links, and announcements about conferences and publications and is located at
http://awpsych.org/index.php?option=com_content&view=article&id=102&Itemid=126
The Association for Women in Psychology (AWP) is a scientific and educational professional organization of psychologists and other social scientists committed to encouraging feminist psychological research, practice, theory and activism.
###
Contact: Audrey Ervin, Ph.D.
Spokesperson, Association for Women in Psychology
http://awpsych.org/
Tel. 1-267-935-9577
Email: audreyerv9@gmail.com
------------------------
FOR IMMEDIATE RELEASE
BIAS IN PSYCHIATRIC DIAGNOSIS WEBSITE EXPOSES PROBLEMS WITH NEW DSM-5
July 13, 2011 The Bias in Psychiatric Diagnosis website
(http://awpsych.org/index.php?option=com_content&view=article&id=102&Itemid=126)
was recently updated to highlight a myriad of concerns about the upcoming 5th edition of the Diagnostic and Statistical Manual (DSM-5) that is scheduled to be released in 2013.
Published by the American Psychiatric Association, the DSM-5 is a reference text used to diagnose what its authors choose to label mental disorders; however, numerous individuals, including three editors of previous DSM editions, and professional organizations, including the Association for Women in Psychology and the American Counseling Association, have expressed misgivings about the ethics, science, implications and processes involved with the new manual development.
Paula J. Caplan, clinical psychologist, researcher at Harvard University and author of They Say Youre Crazy: How the Worlds Most Powerful Psychiatrists Decide Whos Normal, chairs the committee of academics, researchers and clinicians who updated the Association for Women in Psychology Bias in Psychiatric Diagnosis website. The updated web site provides information for mental health professionals, journalists and other interested individuals about newly proposed diagnostic categories and problems with psychiatric diagnosis.
The website hosts a collection of materials that provide evidence of discrimination, lack of empirical evidence and critiques of the DSM-5 manual preparation process. Articles on the site highlight newly proposed diagnoses, such as obesity and female sexual dysfunction, that are under-researched, have limited empirical support, and are politically motivated or based on methodologically weak studies. There is concern that the medicalization of normal, everyday or socially-created problems will falsely inflate the rates of mental disorders.
Some of the newly proposed diagnoses may have detrimental social and legal consequences. Parental Alienation Syndrome could serve to defend parents accused of sexual abuse. Paraphilic Coercive Disorder can constitute a virtually automatic ground for a reduced sentence for rapists without taking into consideration a sociocultural environment that perpetuates violence. Premenstrual Dysphoric Disorder, which has far-reaching sociopolitical consequences and little empirical evidence, pathologizes womens natural human experience and has not been shown by well-done research to be a valid entity.
Several psychiatric diagnoses may be more related to social marginalization, poverty and discrimination than individual pathology; however, individuals are labeled with little regard to circumstance. Biological and medical factors are being overemphasized while political, social, cultural and systemic issues are being minimized or ignored, despite the bulk of social science research that substantiates the magnitude of contextual factors.
The Bias in Psychiatric website includes articles, related references, links, and announcements about conferences and publications and is located at
http://awpsych.org/index.php?option=com_content&view=article&id=102&Itemid=126
The Association for Women in Psychology (AWP) is a scientific and educational professional organization of psychologists and other social scientists committed to encouraging feminist psychological research, practice, theory and activism.
###
Contact: Audrey Ervin, Ph.D.
Spokesperson, Association for Women in Psychology
http://awpsych.org/
Tel. 1-267-935-9577
Email: audreyerv9@gmail.com
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http://dxrevisionwatch.wordpress.com/dsm-5-proposals/dsm-5-submissions-2011/3/
Submission by UK patient 3
General comments on the introduction to Somatic Symptom Disorders. Provision to comment not provided for within the SSD section:
Psychological factors affecting medical condition
A. A general medical condition is present.
An explicit cautionary note is required to address the circumstances where the general medical condition is either poorly understood, poorly described or is of unknown aetiology. Psychiatric ascription must not be used as a substitute for the lack of medical certainty.
B. Psychological or behavioral factors adversely affect the general medical condition in at least one of the following ways:
1. the factors have influenced the course of the general medical condition as shown by a close temporal association between the psychological factors and the development or exacerbation of, or delayed recovery from, the general medical condition.
An exclusionary note is required to secure avoidance of a circulatory diagnostic process, whereby the development, exacerbation or delayed recovery is of/from symptoms which are of putative somatisational origin and which accompany the identified general medical condition.
2. the factors (e.g. poor adherence) interfere with the treatment of the general medical condition.
Exclusionary notes are required to address the circumstances where no standardised treatment of the general medical condition exists, and where treatment regimes are only variably effective and where the side effects of treatment involve significant discomfort or distress. Psychiatry should serve as a compliance agency, making pejorative judgements on patients making reasoned assessments of the costs and benefits of a prescribed treatment.
Comments on individual sections:
J 00 Complex Somatic symptom disorder (CSSD)
Some patients feel that their medical assessment and treatment have been inadequate.
This text should be matched with a caution that diagnosis under CSSD should not be considered where there is any doubt about the appropriateness of the preceding treatment that the patient has received some patients will indeed have received inadequate medical assessment and treatment at the point where a psychiatric diagnosis is under consideration.
For needs of clarity a specified exclusion from CCSD diagnosis is required for all patients who have medical complaints remaining to be addressed by an appropriate specialism.
J 01 Simple Somatic Symptom Disorder
(3) Excessive time and energy devoted to these symptoms or health concerns.
A test of reasonableness of time and energy expended is required if this is to be a legitimate test. An individual who has multiple disabilities will necessarily expend much more time and energy managing their disablement, than an individual with a single disabling symptom. Objective separation of symptom and concern is also required if this is to be a meaningful test.
J 03 Functional Neurological Disorder (Conversion Disorder)
This diagnosis is highly problematic, providing the potential to confer a psychiatric diagnosis merely on the ascription of an inadequately formulated neurological diagnosis. The creation of such a default has no medical value and FND should be abandoned as a diagnostic category until such time as defining psychological characteristics can be quantified.
Submission by UK patient 3
General comments on the introduction to Somatic Symptom Disorders. Provision to comment not provided for within the SSD section:
Psychological factors affecting medical condition
A. A general medical condition is present.
An explicit cautionary note is required to address the circumstances where the general medical condition is either poorly understood, poorly described or is of unknown aetiology. Psychiatric ascription must not be used as a substitute for the lack of medical certainty.
B. Psychological or behavioral factors adversely affect the general medical condition in at least one of the following ways:
1. the factors have influenced the course of the general medical condition as shown by a close temporal association between the psychological factors and the development or exacerbation of, or delayed recovery from, the general medical condition.
An exclusionary note is required to secure avoidance of a circulatory diagnostic process, whereby the development, exacerbation or delayed recovery is of/from symptoms which are of putative somatisational origin and which accompany the identified general medical condition.
2. the factors (e.g. poor adherence) interfere with the treatment of the general medical condition.
Exclusionary notes are required to address the circumstances where no standardised treatment of the general medical condition exists, and where treatment regimes are only variably effective and where the side effects of treatment involve significant discomfort or distress. Psychiatry should serve as a compliance agency, making pejorative judgements on patients making reasoned assessments of the costs and benefits of a prescribed treatment.
Comments on individual sections:
J 00 Complex Somatic symptom disorder (CSSD)
Some patients feel that their medical assessment and treatment have been inadequate.
This text should be matched with a caution that diagnosis under CSSD should not be considered where there is any doubt about the appropriateness of the preceding treatment that the patient has received some patients will indeed have received inadequate medical assessment and treatment at the point where a psychiatric diagnosis is under consideration.
For needs of clarity a specified exclusion from CCSD diagnosis is required for all patients who have medical complaints remaining to be addressed by an appropriate specialism.
J 01 Simple Somatic Symptom Disorder
(3) Excessive time and energy devoted to these symptoms or health concerns.
A test of reasonableness of time and energy expended is required if this is to be a legitimate test. An individual who has multiple disabilities will necessarily expend much more time and energy managing their disablement, than an individual with a single disabling symptom. Objective separation of symptom and concern is also required if this is to be a meaningful test.
J 03 Functional Neurological Disorder (Conversion Disorder)
This diagnosis is highly problematic, providing the potential to confer a psychiatric diagnosis merely on the ascription of an inadequately formulated neurological diagnosis. The creation of such a default has no medical value and FND should be abandoned as a diagnostic category until such time as defining psychological characteristics can be quantified.
