Discussion in 'Action Alerts and Advocacy' started by Khalyal, Feb 12, 2010.
I want to thank you for your monumental efforts with this issue.:victory: Awesome job!
I agree, nobody does it like Suzy
Thank you, Dreambirdie and valia.
Dr Yes, please free up some space in your PM box, cannot respond
Thank you for working so hard on this Suzy and keeping us all up to date on it!! :victory: :sofa: :victory:
Well done to Suzy.
For what it's worth, this is what I submitted.....didn't post it sooner, bc I barely managed to finish it in time (too exhausted and too much brain fog prior to yesterday).....also I didn't mention much about CFS specifically, or say anything about being a patient, bc I felt that using my professional expertise in this matter would be more likely to be effective (though I am disabled now, I do have a counseling degree and have used the DSM)....
As a counselor, I am very familiar with the DSM and have used it a lot. I believe that it is a valuable tool for diagnosing and understanding clients. I also believe that it can be dangerous when applied too rigidly, and when its use causes practitioners to put clients in boxes, rather than view them as individuals. It can also lead to self-fulfilling behaviors on the part of the clients and to problems with insurance company coverage and general stigma, especially if a misdiagnosis gets stuck on a client. For such reasons, it is something that should be used with caution, understanding, and a respect for its impact. Additionally, it should be made as clear and precise as possible, while at the same time not getting so stringent it fails to diagnose those who would benefit from the understanding and proper treatment that can come from accurate diagnosis.
It is my feeling that the proposed CSSD diagnosis will do much more damage than good. It is highly subjective, using language that in all likelihood will lead to patients with chronic illnesses, who are not genuinely mentally ill, getting labeled as having CSSD. It is also far too broad, and as such will be highly likely to lead to misdiagnoses.
Starting with the first criteria, I feel that considering anyone with only one somatic symptom, no matter how severe, to have a mental disorder is dangerously inclusive. Having more than one symptom does not automatically mean that the patient is imagining the illness or is mentally ill either, though, even if the medical profession has yet to find the reason for those symptoms. It has been shown to be the case that most people with chronic illnesses wind up with a multitude of symptoms and not all are necessarily within the medical professions' ability to explain. Rather than pointing to these symptoms being in the patients' heads, though, this often simply means that the doctors do not yet have the knowledge to understand what is happening.
I have the utmost respect for doctors, but they are still human, and there is still a lot about the body and mind that is simply not known. If we always assumed that this meant that the patients must be imagining their symptoms, or malingering, or anything else along those lines, we would never have advanced medically to the point where we are now, and if we continue to try to put medically unexplained symptoms in the realm of somatic disorders, then we may fail to continue to progress, and that is certainly not what medicine is supposed to be about. It definitely does not serve the patients well at all.
Going on to the second set of criteria, a "high level of health related anxiety" is not only entirely subjective, but is also to be expected from anyone who has an illness that seriously disrupts his or her life. I would be more concerned as a counselor, with a client who fails to acknowledge and show anxiety about the impact of a life-changing, long term illness than I would be with one who admits to a significant degree of anxiety about it. Failing to have anxiety about such an issue would tell me that the client is in denial and/or has not yet realized just how much his or her life is going to be effected, and therefore that such a client is not ready and/or able to effectively cope with such an illness. On the contrary, anxiety about such an illness tells me that the client is facing what is happening and is aware of the reality of it, and may be ready to work on coping strategies.
The second part of this, "normal bodily symptoms viewed as threatening and harmful" would certainly appear to be reasonable criteria for including in a diagnosis; however, even this is not as straight forwards as it seems. I say this because many of the symptoms that can come with chronic illnesses may well be normal symptoms, but given the multitude of symptoms that usually do occur with such illnesses, the often changing nature of them, and the lack of medical understanding about many of them; the complexity of separating normal from abnormal becomes less clear. Additionally, when the doctors are frequently telling these patients that their symptoms are medically unexplainable, that does not give the patient reassurance that their symptoms are, in fact, normal, at all.
The "tendency to assume the worst about their health" is again a subjective criterion. If the client is dealing with a life altering, life shattering, or even terminal illness, then he or she is living with "the worst" and that is reality; not catastrophizing. Certainly there are levels of acceptance that are healthy versus levels that could be classified as unhealthy preoccupation and catastrophizing; however, this criterion does not make a clear distinction.
"Belief in the medical seriousness of their symptoms despite evidence to the contrary" would seem to be more clear cut; however, this is not even always entirely clear when dealing with medically unexplained illnesses. If a patient is experiencing symptoms that are truly medically understood and have been completely shown to not be serious, then this criterion is absolutely clear and accurate. If the only reason that one is saying that the symptoms are not deemed serious, though, is that the medical profession has yet to explain them, then this criteria also has the possibility of being applied inaccurately.
As to the final criteria in this section, "health concerns assume a central role in their lives", I find this one the most appalling of all. When one has a serious, chronic illness; terminal or not, it is impossible for that illness to fail to assume a central role in the ill person's life. If one is bed bound, wheelchair bound, dying, or even just extremely limited and barely unable to take care of oneself, by definition that illness is in control of much of the person's life, and therefore cannot fail to take a central role. Does this mean that the person cannot learn to adjust and to have a fulfilling, albeit changed life? Of course, not! However, to try to relegate the illness to a back seat role and to fail to make accommodations in one's life is not only not possible, but it is not healthy.
Finally, the diagnostic time line of being ill for at least six months is a rather arbitrary designation. Nearly all chronic illnesses do last this long and most last much longer. This does not make them mental illnesses, but rather chronic illnesses that can be entirely physical in nature.
I feel that the current diagnostic criteria related to somatic illnesses (in the DSM IV TR) are much more clear and accurate than the proposed version. I especially believe that unless this proposal is changed to exclude many chronic illnesses, terminal illnesses, and illnesses where the main reason for inclusion is simply that the medical profession is unable to fully explain them, this has the potential for more harm than good. Illnesses like Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities, and Gulf War Syndrome are especially vulnerable for being misdiagnosed as CSSD under these criteria, even though there is increasing evidence of the physiological etiology for each. Even illnesses like cancer, AIDS, MS, and Lupus could easily wind up falling under this umbrella, if the criteria are left as is.
Not only will this not serve the patients' best interest in getting the help that they need, but it actually has the potential to cause a lot of harm by in essence telling the patients and their doctors, friends, family, etc that they are mentally ill, and discounting the real physical causes for their poor health. It will add a stigma and condemnation (unfair though it may be) to the already considerable burden of their illness and could further alienate an already isolated population. It can also make it even more difficult for those who need disability and financial support to get it, because it implies that the illness is not a real physical illness.
Finally, as things stand, patients with physical illnesses are not in any danger of failing to get help for co-morbid mental health issues. If someone with a chronic illness is experiencing an excessive amount of anxiety or is depressed or otherwise struggling to cope with that illness, or if someone with a physical illness has an unrelated mental illness, he or she is able, under current diagnostics guidelines, to get the help needed, in addition to getting help for that physical illness. Changing to the proposed criteria does not impact that in any way for the better, but it does have the potential to cause a great deal of harm. It could very well even limit the amount of help that is available for the physical issues if these patients are shifted to solely mental health diagnoses when they do have physical illnesses.
Thank you, Tee and Fred for your kind words, and Tammie for submitting.
I'll be adding copies of submissions to my site over the next few days. Currently I have the following:
IACFS/ME, Vermont CFIDS Association, The CFIDS Association of America, Mass. CFIDS/ME & FM, Invest in ME, 25% ME Group, Action for M.E.
Mary Schweitzer, Andrew, Ian McLachlan, Peter Kemp
It hasn't been established yet whether ESME and WPI submitted (both had said they would).
The following are waiting to be added:
The ME Association's endorsement (prepared by psychology adviser to MEA)
A couple of others from elsewhere.
There have been more on this thread. If you're not already listed above and would like your submission published on my Dx Revision Watch site I will need from you:
A PM with the post number (or a copy of the submission if not posted in the thread).
Your preference for how you want to be signed.
I won't add any to my site without a confirmation of permission to publish.
Then I will add them to the others, here:
Dx Revision Watch > DSM-5 submissions
If you are a member of a patient group that is known to have submitted, or know of a professional who submitted, let me know so we can negotiate for permission to publish.
I'm advised that WPI will be publishing there submission soon.
CFS Associazione Italiana / CFS Italian Association's Notes
Letter that the CFS Italian Association sent to the DSM-5 Task Force - English version
This is the letter that our association sent to the DMS-5 Task Force:
Suzy, If you would like to add mine, that would be fine with me.....the whole thing is thread #148 on here (minus, of course the top paragraph). You can "sign" it with:
Tammie Page, M.A.
APA News Release: APA Closes Public Comment Period for Draft Diagnostic Criteria for
APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5
For Information Contact:
Eve Herold, 703-907-8640
firstname.lastname@example.org Release No. 10-31
Jaime Valora, 703-907-8562
EMBARGOED For Release Until: April 20, 2010, 12:01 AM EDT
APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5
DSM-5 Work Groups to Review Comments
ARLINGTON, Va. (April 20, 2010) -The American Psychiatric Association
received 6,400 comments on a draft of the fifth edition of the Diagnostic
and Statistical Manual of Mental Disorders during a 2 month public comment
period, which ends today.
"This period of public review and comment of diagnostic criteria is
unprecedented in both the field of psychiatry and in medicine," said Alan
F. Schatzberg, M.D., president of the American Psychiatric Association. "It
demonstrates the APA's commitment to an inclusive and transparent process
of development for DSM-5."
The criteria have been available for comment since they were published
online on Feb. 10. The draft criteria will continue to be available for
review on the DSM-5 Web site, www.dsm5.org, and updates to the draft will
be posted on an ongoing basis. The public will have another opportunity to
comment on the criteria and any changes after the first round of field
A number of clinicians, researchers and family and patient advocates
participated in the public comment period, contributing more than 6,400
comments on various aspects of DSM-5.
All comments submitted via the Web site were assigned to a topic-specific
expert from one of the thirteen DSM-5 work groups for review. In their
review, work group members will note submissions that need additional
consideration from the work group as a whole. Upon evaluation from the
entire work group, draft criteria may be revised.
For example, the Eating Disorders Work Group has proposed additional
revisions to criteria for Anorexia Nervosa and Bulimia Nervosa based on
"The goal of DSM-5 is to create an evidence-based manual that is useful to
clinicians and represents the best science available," said David J.
Kupfer, M.D., DSM-5 Task Force chair.
"The comments we received provide the task force and work groups with
additional information and perspectives, ensuring that we have fully
considered the impact any changes would have on clinical practice and
disorder prevalence, as well as other real-world implications of revised
Most of the comments that were submitted were diagnosis-specific, while
nearly one-fourth were general. Distribution of the comments varied across
the 13 work groups.
The work groups with the largest number of submitted comments include:
. Neurodevelopmental Disorders Work Group (23% of comments)
. Anxiety Disorders Work Group (15% of comments)
. Psychosis Disorder Work Group (11% of comments)
. Sexual and Gender Identity Disorders (10% of comments)
Following a review of all submitted comments and possible revisions to the
draft criteria, the APA will begin a series of field trials to test some of
the proposed diagnostic criteria in clinical settings. The proposed
criteria will continue to be reviewed and refined over the next two years.
Final publication of DSM-5 is planned for May 2013
That's great, Tammie, thanks. Will add it to the others tomorrow.
All done Tammie, and thank you for permission to publish another excellent response. It would be good to know how many responses the SSD WG has received.
It's on this page, here: http://wp.me/PKrrB-AQ about seven twelfths down the page.
There are more to come - WPI and some others from elsewhere and I think I will have to split the page across two pages - one for orgs and one for patient advocates as it's getting too long.
If there are any more of you who posted your submissions, here, or have submitted but not yet posted but who would like their response published on Dx Revision Watch let's be 'aving yer...
WPI response to DSM-5
and in attachment
Note, sent to Task Force, presumably via email attachment or paper letter, as there was no facility for including attachments when uploading comments to the Work Group category proposals.
Response from Netherlands CFS patient organisation:
Very nice submission from the WPI!
Only one mistake Retro tongue, the one that keeps popping up (bold mine):
She means psychiatric, psychosomatic, or somatoform instead of "somatic", which means "of the body" or, basically, 'physical'. (Just thought I'd point that out as we need to get our terminology right when addressing these folks!)
I am not anal.
You are quite correct to point this out.
Thank YOU for putting this all together....very much appreciated and very helpful
Angela Kennedy put the following out on another list, last year. It was intended for wider circulation so I know she'll be OK with my posting here:
I've noticed for some time that various people have been using the term 'somatic' as if it signified a 'psychosomatic' or 'psychogenic' condition.
This is incorrect. The OED definition of 'somatic' is "of or relating to the body, **especially as distinct from the mind**" (my italics) The word comes from the Greek 'soma' meaning 'body'.
Even when proponents of 'psychogenic' explanations (it's in your mind, you're imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term 'somatic illness' they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word 'somatic' does not mean "illness caused by psychological dysfunction". It merely means illness of a body, or a bodily illness.
It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word 'somatic' incorrectly!
Angela Kennedy, June 2009
Per Fink paper
Here's Danish researcher, Per Fink, still beating his "bodily distress" horse to death:
Per Fink was a member of the CISSD Project, co-ordinated by Richard Sykes, PhD, between 2003 and 2007 which has fed into the DSM and ICD revision processes.
The Editorial: Is there a better term than Medically unexplained symptoms? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (J Psychoso Res: Volume 68, Issue 1, Pages 5-8.) discussed the deliberations of the EACLPP study group on which I have previously reported. The Editorial also included references to the DSM and ICD revision processes:
The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have medically unexplained symptoms or somatisation . Part of this document identifies barriers to improved care and it has become apparent that the term medically unexplained symptoms is itself a barrier to improved care
The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term.The deliberations of the group form the basis of this paper
Our priority was to identify a term or terms that would facilitate management that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists.
Criteria to judge the value of alternative terms for medically unexplained symptoms
Ten criteria were developed in order to judge the value of potential terms which might be used to describe the group of symptoms currently referred to as medically unexplained symptoms. Obviously, this list of criteria does not claim to be exhaustive, but we believe that it captures the most important aspects. The criteria are that the term:
1. is acceptable to patients
2. is acceptable and usable by doctors and other health care professionals, making it likely that they will use it in daily practice.
3. does not reinforce unhelpful dualistic thinking.
4. can be used readily in patients who also have pathologically established disease
5. can be adequate as a stand alone diagnosis
6. has a clear core theoretical concept
7. will facilitate the possibility of multi-disciplinary (medical and psychological) treatment
8. has similar meaning in different cultures
9. is neutral with regard to aetiology and pathology
10. has a satisfactory acronym.
Terms suggested as alternatives for medically unexplained symptoms
The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:
1. Medically unexplained symptoms or medically unexplained physical symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder
Implications for DSM-V and ICD-11
There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV somatoform and related disorders. In this working group, similar concerns about the use of the term and concept of medically unexplained symptoms have been raised . The current suggestion by the DSM-V work group to use the term Complex somatic symptom disorder must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above.
One major problem for reforming the classification relates to the fact that the DSM system includes only mental disorders whereas what we have described above is the necessity of not trying to force these disorders into either a mental or physical classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.
The solution of interface disorders, suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the physical classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely .
The European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) http://www.eaclpp.org/ published a white paper, last year,
A white paper of the EACLPP Medically Unexplained Symptoms study group Patients with medically unexplained symptoms and somatisation a challenge for European health care systems
The White Paper can be downloaded from the EACLPP site here: http://www.eaclpp.org/working_groups.html
Per Fink is a member of the Danish Working Group on Chronic Fatigue Syndrome, established in August 2008 which was expected to complete its work in spring 2009.
In May 2008, Per Fink gave the keynote address to a conference:
The Irish College of Psychiatrists Bulletin
Vol 3, Issue 1. May 2008
http://www.irishpsychiatry.ie/pdf/Newsletter May 08.pdf
His presentation is reported on, on Page 8:
[...] His presentation also examined the claims of several of the pseudonym somatoform conditions which have been invented by various branches of medicine. He found that there were no differences in the symptoms reported by patients diagnosed with Fibromyalgia; Multiple Chemical Sensitivity; Sick Building Syndrome and Chronic Fatigue Syndrome confirming the long-held clinical opinion that these are all the same condition: somatoform disorder. He also suggested a possible new name for the condition; Body Distress Disorder which he believes may be more acceptable to patients and GPs.
The paper, below, is published in the May edition of the Journal of Psychosomatic Research, for which Francis Creed is the co-editor.
(With acknowledgement to Kelly for highlighting this paper on Co-Cure.)
J Psychosom Res. 2010 May;68(5):415-26.
One single diagnosis, bodily distress syndrome, succeeded to capture 10
diagnostic categories of functional somatic syndromes and somatoform
Fink P, Schrder A.
The Research Clinic for Functional Disorders and Psychosomatics, Aarhus
University Hospital, 8000 Aarhus, Denmark. email@example.com
BACKGROUND: In order to clarify the classification of physical complaints
not attributable to verifiable, conventionally defined diseases, a new
diagnosis of bodily distress syndrome was introduced. The aim of this study
was to test if patients diagnosed with one of six different functional
somatic syndromes or a DSM-IV somatoform disorder characterized by physical
symptoms were captured by the new diagnosis.
METHOD: A stratified sample of 978 consecutive patients from neurological
(n=120) and medical (n=157) departments and from primary care (n=701) was
examined applying post-hoc diagnoses based on the Schedules for Clinical
Assessment in Neuropsychiatry diagnostic instrument. Diagnoses were assigned
only to clinically relevant cases, i.e., patients with impairing illness.
RESULTS: Bodily distress syndrome included all patients with fibromyalgia
(n=58); chronic fatigue syndrome (n=54) and hyperventilation syndrome
(n=49); 98% of those with irritable bowel syndrome (n=43); and at least 90%
of patients with noncardiac chest pain (n=129), pain syndrome (n=130), or
any somatoform disorder (n=178). The overall agreement of bodily distress
syndrome with any of these diagnostic categories was 95% (95% CI 93.1-96.0;
kappa 0.86, P<.0001). Symptom profiles of bodily distress syndrome organ
subtypes were similar to those of the corresponding functional somatic
syndromes with diagnostic agreement ranging from 90% to 95%.
CONCLUSION: Bodily distress syndrome seem to cover most of the relevant
"somatoform" or "functional" syndromes presenting with physical symptoms,
not explained by well-recognized medical illness, thereby offering a common
ground for the understanding of functional somatic symptoms. This may help
unifying research efforts across medical disciplines and facilitate delivery
of evidence-based care.
Copyright 2010 Elsevier Inc. All rights reserved.
Yes, that will be because it is isn't a mental or behavioural illness. Quite simple, really. But psychiatric bods don't let facts get in the way of their reasoning, do they?
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