the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

Call for Action - Second DSM-5 public comment period closes June 15

Word .doc and PDF formats:

Word

PDF

The two key DSM-5 proposal PDFs

Thanks Suzy

That was very helpful.

This current review period has been around six weeks. The first review period was, I think, around ten weeks. This review period could have done with being at least a couple of months long to allow patient groups to present proposals to, and consult with their constituents, consult outside medical advisors etc and prepare their submissions

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My thoughts too....which is why I posed the question.

It would be a good idea if various colleges of physicians across the world put in submissions too

The APA has reported receiving over 8000 comments across all categories in the first public review, last year.

This wasn't a public consultation exercise as such, in the sense that responses were reviewed, published and responded to publicly, by the Task Force, and there was no collation of key areas of concern raised with the various work groups nor work group responses to key areas of concern.

But it would have been welcomed if the names of the professional bodies/institutions/patient organizations/whatever that submitted could have been recorded on the DSM-5 Development site, so it was evident to the public and professionals which bodies had made submissions - in the way that public inquiries record Written Submissions.

Over the next couple of days, I shall be chasing those patient orgs that I have already contacted and any responses that are made public, I will post on my site.

Suzy

ETA: Something I meant to mention is that originally, the second public review period was scheduled for May until June 30. Then the DSM-5 Task Force published a revised Timeline which scheduled a review period from August until September 30 (one day before the ICD-10-CM Partial Code Freeze) with no mention of a May/June review.

Then they apparently reverted to the previous plan to launch a public review in May, but this time until June 15 not June 30, and they published a new Timeline on 4 May, which also scheduled a third review (of two months duration) for early next year.

So those of us who are monitoring DSM-5, but don't have sources for insider information, will have been caught out. I certainly was. Because of the revised Timeline I was not expecting the second draft to launch in May. So I had been unable to alert patient groups in advance, as I was expecting the second draft to come out in August.

Index: Recent posts around DSM-5 second public review

Index: Recent posts around DSM-5 second public review

Shortlink Post #84: http://wp.me/pKrrB-18z

As a number of posts have been published recently on my Dx Revision Watch site around the DSM-5 public review, I am providing an Index:


5 May 2011 Post #73: http://wp.me/pKrrB-12k

American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

Post announcing launch of second DSM-5 public review period with links to DSM-5 Development site and to media coverage.



6 May 2011 Post #74: http://wp.me/pKrrB-12x

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

Copy of APA News Release No. 11-27 announcing the posting on 4 May of revised draft criteria for DSM-5 on the DSM-5 Development website and a second public review period running from May to June 15.



8 May 2011 Post #75: http://wp.me/pKrrB-12P

What are the latest proposals for DSM-5 Somatic Symptom Disorders categories and why are they problematic? (Part 1)

Part 1 of this report is a Q & A addressing some of the queries that have been raised with me around the DSM-5 public review process. Includes table comparing Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents. Also includes a screenshot from Chapter 5 (V) Somatoform Disorders (the F codes) F45 F48.0 (as displaying in the iCAT Alpha Drafting platform in November 2010; this drafting platform has since been replaced by another public Alpha drafting browser launched on 17 May 2011 - see Post #81: ICD-11 Alpha Drafting platform launched 17 May (public version): http://wp.me/pKrrB-16N).



10 May 2011 Post #77: http://wp.me/pKrrB-13z

What are the latest proposals for DSM-5 Somatic Symptom Disorders categories and why are they problematic? (Part 2)

In Part 2 of this report, I set out the latest proposals for draft criteria (dated 14 April 2011) from the DSM-5 Somatic Symptom Disorders Work Group, as published on the DSM-5 Development website, on 4 May.



12 May 2011 Post #78: http://wp.me/pKrrB-15q

Registering to submit comment in the second DSM-5 public review of draft criteria

Information on registering for and submitting comment in the second DSM-5 public review.



18 May 2011 Post #80: http://wp.me/pKrrB-15X

What are the latest proposals for DSM-5 Somatic Symptom Disorders categories and why are they problematic? (Part 3)

In Part 3 of this report, I posted extracts from Disorders Description, the first of the two key PDF documents that accompany the revised proposals, highlighting passages in yellow to indicate why ME and CFS patient representation organizations, professionals and advocates need to register their concerns via this second public review.



22 May 2011 Post #82: http://wp.me/pKrrB-16B

What are the latest proposals for DSM-5 Somatic Symptom Disorders categories and why are they problematic? (Part 4)

In Part 4 of this report, I posted the complete text of the key Rationale document that accompanies the draft proposals of the Somatic Symptom Disorders Work Group, omitting several pages of references to published and unpublished research papers



22 May 2011 Post #83: http://wp.me/pKrrB-12d

Call for Action Second DSM-5 public comment period closes June 15

Sets out why patients, patient organizations, advocates, clinicians, allied health professionals, lawyers and other professional end users need to review the proposals of the Somatic Symptom Disorders Work Group and submit responses. Includes copy of post in Word .doc and PDF formats.

Hi all, sorry havent had time to read through all the post to check, but has anybody noticed in this DSM Validity Propositions 4-18-11.pdf? (235.7 KB, 3 views) who is in the references??? Michael Sharpe!!!! Wesselys best mate and one of the writers of the Oxford and Fukuda criteria!!

Sharpe M. Distinguishing malingering from psychiatric disorders. In Halligan PW, Bass C, Oakley DA, eds. Malingering and illness deception, Oxford: OUP, 2003.

Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P: Is there a better term than "medically unexplained symptoms"? Journal of Psychosomatic Research 2010; 68(1):5-8

Dimsdale J, Sharma N, Sharpe M, What do physicians think about somatoform disorders? Unpublished

Kroenke K, Sharpe M, Sykes R, Revising the Classification of Somatoform, Disorders: Key Questions and Preliminary recommendations, Psychosomatics 2007 48:277-285.

Stone J, LaFrance WC, Levenson JL, Sharpe M: Issues for DSM-5: Conversion disorder. Am J Psychiatry 2010; 167(6):626-627

Stone J, Warlow C, Sharpe M: The symptom of functional weakness: a controlled study of 107 patients. Brain 2010

Stone J, Carson A, Sharpe M. Functional symptoms and signs in neurology: assessment and diagnosis. J. Neurol. Neurosurg. Psychiatry 2005;76 Suppl 1:i2-i12.

Stone J, Smyth R, Carson A, Lewis S, Prescott R, Warlow C, Sharpe M: Systematic review of misdiagnosis of conversion symptoms and "hysteria". BMJ 2005; 331(7523):989

If this goes through its going to be the cross that youre all going to get nailed to!!

With this they can say that anyone who doesnt have failed medical tests has a Somatic illness and the CFS definitions guarantee no one can get tested properly!!!

This has to be stopped; it has the Wessely Schools hand writing all over it!!!!

All the best

Creepy lot these psyches ! Trying the "soft shoe shuffle".

rlc said:

Hi all, sorry havent had time to read through all the post to check, but has anybody noticed in this DSM Validity Propositions 4-18-11.pdf? (235.7 KB, 3 views) who is in the references??? Michael Sharpe!!!! Wesselys best mate and one of the writers of the Oxford and Fukuda criteria!!

Sharpe M. Distinguishing malingering from psychiatric disorders. In Halligan PW, Bass C, Oakley DA, eds. Malingering and illness deception, Oxford: OUP, 2003.

Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P: Is there a better term than "medically unexplained symptoms"? Journal of Psychosomatic Research 2010; 68(1):5-8

Dimsdale J, Sharma N, Sharpe M, What do physicians think about somatoform disorders? Unpublished

Kroenke K, Sharpe M, Sykes R, Revising the Classification of Somatoform, Disorders: Key Questions and Preliminary recommendations, Psychosomatics 2007 48:277-285 etc

Click to expand...

Ric, the names of the members of the various DSM-5 Work Groups were published by the APA in a Press Release in May 2008 and have been noted in this thread and on my website.


Michael Sharpe is a member of the Somatic Symptom Disorders Work Group.
So is Frances Creed.
The Chair is Joel Dimsdale.

The full list of members plus bios and Disclosure is here:

http://www.dsm5.org/MeetUs/Pages/SomaticDistressDisorders.aspx

Dimsdale, Joel E., M.D.
Barsky III, Arthur J., M.D.
Creed, Francis, M.D.
Frasure-Smith, Nancy, Ph.D.
Irwin, Michael R., M.D.
Keefe, Francis J., Ph.D.
Lee, Sing, M.D.
Levenson, James L., M.D.
Sharpe, Michael, M.D .
Wulsin, Lawson R., M.D.


The presenters at this 2006 APA Symposium might also interest you:

http://www.dsm5.org/Research/Pages/SomaticPresentationsofMentalDisorders(September6-8,2006).aspx

Somatic Presentations of Mental Disorders (September 6-8, 2006)

also note:

Javier Escobar, MD, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the US National Institute of Mental Health (NIMH) is a member of the DSM-5 Task Force.

Dr Escobar serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and works closely with this group.

In an August 08, co-authored Special Report for Psychiatric Times: Unexplained Physical Symptoms Whats a Psychiatrist to Do? the authors write:

Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of medicalized, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others.

These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.

In Table 1, under the heading Functional Somatic Syndromes (FSS) Escobar and Marin list:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome

Source: http://dxrevisionwatch.wordpress.com/about/

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I hope you'll be lobbying patient orgs to submit a response in this year's public review of draft criteria.

Suzy

Patient org and professional submissions to DSM-5

Last year, I posted a copy of the Mass CFIDS/ME & FM Association's submission to DSM-5 proposals on my website (copy on the Submissons page here: http://wp.me/PKrrB-AQ).

An additional response was submitted, last year, by Kenneth Casanova, a Board member and former President of the Mass CFIDS/ME & FM Association's, for which I do not have a copy on my site, as this has only just come to my attention.


(From 2010)

http://www.masscfids.org/advocacy

National advocacy efforts state concerns about revisions to DSM-V

The Massachusetts CFIDS/ME & FM Association has joined with other U.S. patient organizations to advocate against the potential misuse of a proposed new psychiatric diagnostic category in the diagnosis of CFIDS/ME and Fibromyalgia.

The revision of the current Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV ) is at the core of our concerns. This Manual, published by the American Psychiatric Association (APA), contains the major listings, definitions, and explanations of different psychiatric and psychological disorders. It is important to note these classifications are used by insurance companies, Medicaid and Medicare for patient billing purposes.

Currently DSM-IV is undergoing a major revision - the new DSM-V Manual is scheduled to be published in 2013. The issue which has raised the serious concern of both U.S. patient associations and of the international CFIDS/ME researchers (the International Association of CFS/ME - IACFS-ME) is a proposed new psychiatric category titled the:

Complex Somatic Symptom Disorder (CSSD)

to be included in the new DSM-V. More specifically, the way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

The crux of the issue is that a person can be psychiatrically diagnosed as having complex somatic symptom disorder if he or she has all of the following:

a) multiple somatic (physical) symptoms, or one severe symptom that have been chronic fatigue for at least six months, and

b) which create a high level of health anxiety and which establish a central role in the patient's life for health concerns.

Does this diagnosis sound like it could easily be misused to diagnose CFIDS/ME, fibromyalgia, or even many other chronic physical illnesses? U.S. patients have already experienced the problematic history of The Centers of Disease Control and Prevention (CDC), The National Institutes of Health (NIH), and the many physicians and researchers discounting CFIDS/ME as a psychiatric illness, maladaptive behavior, or inability to cope with stress. If this new diagnostic code were to be accepted, then patients potentially could be labeled with complex somatic symptom disorder just because they are pushing doctors for answers to many symptoms.

In their explanation of the CSSD diagnosis, the American Psychiatric Association (APA) Committee states: "Some patients, for instance, with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis."

As a result, this development galvanized patient associations around the country, as well as the IACFS/ME, to protest any misuse of the new CSSD category. This was accomplished by submitting strong letters on behalf of the illnesses to the APA during the comment period, which closed on April 20, 2010.

On behalf of the Massachusetts CFIDS/ME & FM Association and the community it serves, several poignant letters were written to the APA. The first letter was submitted by Dr. Alan Gurwitt, MASS CFIDS/ME & FM Association's President. It focused particularly on the incontrovertible medical research clearly demonstrating the biological and physiological bases of the illnesses. A second letter was submitted by Ken Casanova, a Board member and past President. It reviewed in detail how the new CSSD diagnosis would make it more difficult to separate physical from psychiatric illnesses, and how the new diagnosis could be mistakenly or intentionally misused.

The International Classification of Diseases-Clinical Modification 9 (ICD-CM-9) used by the CDC is different than the version used by WHO. The CDC is planning to update the ICD-CM- 9 to the ICD-CM-10 in 2013. However, the International WHO Code is being updated to version ICD-11 in 2014. This means the code the CDC will be using is still behind the WHO. The CFIDS and FM communities' concern is that the new CSSD classification could influence how CFIDS/ME and FM are listed in both the CDC and WHO classifications.

20+ years after first naming the illness Chronic Fatigue Syndrome, the CDC is now wanting to update its classification. The serious concern is that the new CSDD diagnosis could negatively influence any new CDC listing of CFIDS/ME. Any new psychiatric bias toward CFIDS/ME and/or FM in the new code could make it more difficult for patients to obtain insurance payments for their treatments. There is also, of course, concern about the effect of CSSD on the WHO code.

There is strength in numbers and our organization advocates on behalf of patients and the impact these illnesses have on their lives. Consider joining our Association so that together our voice and our actions will be stronger.


Click here to read Dr. Alan Gurwitt's letter to APA: http://www.masscfids.org/advocacy/219

Click here to read Kenneth Casanova's letter to APA: http://www.masscfids.org/advocacy/220

Kenneth Casanova's letter to DSM-V Committee of the APA
Specifically flawed CSSD diagnosis
Special problems with physiologically-induced pain disorders
CSSD definition is open to misinterpretation
Changes incorporated in CSSD from DSM-IV
CSSD & ICD-10-CM and ICD-11

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Suzy Chapman

I think psychiatry is desperately in need of radical reform to eliminate its' deep rooted structural abuses.
But soon the psychiatrists will be realising this too.

Hi Suzy

Do you know whether the AMA has a good professional indemnity insurance policy?

They may well need good coverage if they implement these changes, when a number of their members get sued ....in the face of subsequent test results that show biological manifestations/ failed test results and multiple missed diagnoses in their ''somatic'' patients. Their members, in which instance -will be looking for a way to redress their losses and will be looking directly at the association and its failure to take such into consideration with their drafting.

I am sure there will be many lawyers dusting off their camoflarge gear -as we speak, with shot guns ready - taking aim at these sitting psychiatric ducks.

Not an intelligent move on the part of Dimsdale et al (no pun intended)

That AMA committee will be remembered by their peers but if their reforms go through on this........for all the wrong reasons.

Thanks currer - your post 209 - deep rooted abuses - now it's time for them to realise and understand their attempts to usurp real medicine. Angela used a phrase "gods of the gaps" - pushing their mumbo jumbo into real medicine wrapped in their theories and choose to ignore. I think the problem of psyches is more widely discussed (some given up even in the realisation they have gone too far with "all in your mind").

Hi suzy, thanks for the info!! Confirms what I thought the Wessely School are rewriting the DSM to suit their own purpose! Although a lot of people are obviously very concerned about this and with very good reason. I think it is very import that everybody is aware of what the next stage is going to be if this is allowed to happen. Once this is done they will then obviously start labelling people with CFS, ME as having a Somatic illness, but its not going to stop there!!!

Once theyve official labelled enough CFS patients with Complex Somatic Symptom Disorder. The next stage will be to get rid of CFS, CFIDS, ME/CFS, CFS/ME and ME as a diagnoses and replace them with Complex Somatic Symptom Disorder, theyll say that as their finding everyone with CFS, ME has CSSD then the old names can be replaced and the changes to the DSM will give them the legal right to do it. Wessely got in a lot of trouble with the World health Organization a few years ago for trying to say the WHO codes said that ME was a psychiatric illness. If they get these changes put into the DSM it gives them a way round that problem, just reclassify every one with CSSD so nobody has ME. Sufferers have wanted a name change for a long time, but its not going to be to a name their going to like.

Once this happens then all research will be stopped because theres no point it looking for a physical cause to a psychiatric illness. And nobody will be able to get medical tests from their doctors because again there is no point in looking for a physical cause for a psychiatric illness. CFS and ME/CFS will be relegated to the history books and replaced with Complex Somatic Symptom Disorder!

This may sound like something it would be impossible for them to do, but theyve done it before! Before 1988 ME was recognized as a very real disease of the Central nervous system by all of the medical community and had thousands of pages of medical and scientific research published on it!! Despite the fact that there is a widely held belief that ME is just an English name for CFS this is not the case in the US ME had been known as Epidemic Neuromyasthenia since the 1950s, it still has due to the confused WHO codes its own ICD code, ICD-9-CM Diagnosis Code 049.8 Iceland disease (epidemic neuromyasthenia) Other specified non-arthropod-borne viral diseases of central nervous system, link http://www.eicd9.com/index.php?action=alphaletter&start=40692&mv=p

All of this the CDC and Wessely have done a very good job of making the world forget in a very short period of time. Wessely and the CDC have managed to make all of this, all but disappear by saying that ME was the same as CFS and CFS is some sort of psychiatric illness, if the changes to the DSM happen it wont just be them saying it, it will become a legal fact. The Wessely School is in control of government policy on this subject in the UK and is financed by the insurance companies who have billions of and dollars to buy off all opposition and are pulling all the strings behind the scenes, and the Wessely school and the insurance companies have been in collusion with the CDC since 1988 this is going to be immediately implemented on both sides of the Atlantic.

The only way any patient with ME is going to be able to legally challenge this and prove that their not nuts, is if they have had done SPECT, PET and QEEG scans that show they have Central nervous system damage, this is almost impossible for anyone to get done now, once its been relabelled as a somatic illness theres no chance of this happening!! Because there are already published scientific papers that show that Cytokine and NK cell dysfunction and low Cortisol are found in Major Depression, this will mean that they will just use the evidence on this subject to say your all nuts!!

If this is allowed to happen to put it none to politely, all the estimated 20 million people with a CFS or ME diagnosis and countless future generations are Screwed!!!!!!!!!!!!!!!! Research will stop and CFS and ME/CFS will be consigned to the history books, just as happened to ME after 1988.

Although obviously I support any and every action being taken to stop this happening, I feel that lobbying patient orgs to submit a response in this year's public review of draft criteria. Has very limited chances of achieving success. The reason being that Michael Sharpe is on public record saying things like.

Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.

Because they View people with CFS, Me as the undeserving sick and we have no medical qualifications so are opinions can be ignored, My opinion is its a bit like the Jews writing a letter to Hitler saying wed like it if you were nicer to us.

My view is that somethings that might help is contacting every doctor and scientist, anyone can think of on the planet, who thinks that these illnesses are physical, no matter what their views on the subject are and get them to submit objections and contact the press about what is happening. Drs like Hyde, Hooper, Dowsett, Mirza, Cheney, Peterson etc, etc, etc and try and create a united front of qualified doctors who will stand up against this.
Write to MPs and congressmen and see if any of them would be interested in getting involved.

As I see it the enemy is about to break through the gates and get everyone reclassified as being nuts, if this is allowed to happen then its game over, everyone with one of these diagnoses and all future generations are going to be left to suffer for the rest of their lives with no hope of help!! I urge everyone to do anything they can think of no matter how big or small that may help in stopping this happening!

All the best

rlc said:

...

My view is that somethings that might help is contacting every doctor and scientist, anyone can think of on the planet, who thinks that these illnesses are physical, no matter what their views on the subject are and get them to submit objections and contact the press about what is happening. Drs like Hyde, Hooper, Dowsett, Mirza, Cheney, Peterson etc, etc, etc and try and create a united front of qualified doctors who will stand up against this.

Write to MPs and congressmen and see if any of them would be interested in getting involved.

As I see it the enemy is about to break through the gates and get everyone reclassified as being nuts, if this is allowed to happen then its game over, everyone with one of these diagnoses and all future generations are going to be left to suffer for the rest of their lives with no hope of help!! I urge everyone to do anything they can think of no matter how big or small that may help in stopping this happening!

All the best

Click to expand...

I haven't claimed that lobbying patient organizations is going to turn these proposals around. But international patient organizations should not be leaving this issue entirely to patients and patient advocates.

What I have said is this:



Other patient groups with stakeholder interest in different sections of DSM-5 have been engaging directly with DSM Work Groups and at APA conferences for at least a couple of years. Some patient groups have been running campaigns for a couple of years to encourage patients and advocates, but importantly, medical professionals, clinicians and allied health professionals to submit responses.

You've said you haven't followed the thread. If you had, you would know that this is not a new issue.

This forum was first made aware of DSM-5 issues by me, back in November/December 2009. There has been time for an organized campaign to have been initiated.

I am UK based and I maintain two websites and I research and report on ICD-11 and DSM-5, and latterly, ICD-10-CM (but am also involved in other ME issues). I am a carer and I have business commitments.

Someone in the US could have created a site specifically for DSM-5 back in early 2010, from the US perspective.

No-one did.

Look at the energy that has been poured into XMRV related threads on this forum. There is energy on these forums that could be tapped into.

I said this 12 months ago.

There are people on this forum who could be compiling lists of US and international medical professionals, clinicians, psychiatrists, lawyers, AHPs etc and contacting them.

The APA sprung this public review. It wasn't expected until August. It wasn't known until 4 May, when the revised criteria were published that the APA were reverting to their previous plans for a May - June public review. So no contact work could be done in advance of 4 May.

There are around three weeks left of this public review.

Before you start reeling off lists of individuals to contact, please do some research. You have said:

Drs like Hyde, Hooper, Dowsett, Mirza, Cheney, Peterson etc, etc, etc and try and create a united front of qualified doctors who will stand up against this.
Write to MPs and congressmen and see if any of them would be interested in getting involved.


Prof Hooper is not a medical practitioner, he is a PhD, but he is already aware of this issue and he was contacted last year and he will be aware of this second public review.

Dr Betty Dowsett is in her 80s, very frail and I understand, in a nursing home.

I'm not sure who you mean by "Mirza". Do you mean the mother of the late, Sophia Mirza? Criona Wilson is not a doctor.

I wouldn't waste time on UK MPs. They cannot even get their heads around ICD-10.


Rather than preaching to the choir on a forum thread. Why not gather a few others around you from the US, UK and internationally, and start contacting practitioners, yourself?


Suzy

From an earlier post in the thread, the following were contacted on 5 May:

None of these has confirmed to date whether they intend to submit:

UK

Action for M.E.
ME Association
TYMES Trust
AYME
Invest in ME
BRAME
25% ME Group
RiME
MERUK and Sue Waddle

International

Jennie Spotila (CFIDS)
Lenny Jason
Kenneth Friedman (Vermont CFIDS Association)
Alan Gurwitt (Mass. CFIDS/ME & FM)
Fred Friedberg (IACFSME)
Chris Hunter (AHME)
ESME
ME-CFS Denmark
Judy Mikovits (WPI)

Contacted within last few days:

Lydia E. Neilson, NATIONAL ME/FM ACTION NETWORK, Canada



I have already asked members to let me know if they have contacted state or national patient organizations or professionals. To date, I have received no information about other organizations or individuals who have been contacted.

I apologize for not keeping up with all the good postings here, but I wished to make some reflections:

1) The shell game with words: "somatic" and "somatoform". Passing off one thing into another. Sleight of hand, fooling the inattentive, confusing then tricking and stealing.

2) The de-legitimizing of a group of patients, switching them(us) into psychiatric territory where no helpful research, treatment or care will be forthcoming.

How typical of neurotic processes! The psychiatric problem is in the eye of the beholder, projected outward onto the patients. Making the other not belong, be illegitimate, undeserving. It is like the Republicans who insist that Obama isn't American, and thus has no right to be President, to lead, to have any power. When this sort of projecting is done, trying to make a person or a group an out-group, we often refer to the treatment of the Jews in Western history. But this time we have the irony of Jews dominating the psychiatric profession, people who ought to know about the dynamics and consequences of "out-grouping".

Well, Freud, the psychiatric profession's culture hero and founding father, as well as some other doctors of his time, did this too with their women patients who were suffering from incest and sexual abuse. The women were seen as only imagining this because they wanted it. No fathers could be doing this in their cultural mythical view. Fathers were legitimate and central to society. It was the female children who were not. One treatment was castration--to remove the supposed source of the offending sexual desires. (Imagine if boys abused by Catholic priests had been 'treated" with castration?) How far projection and abuse go--History says--goes all the way. Why we are so collectively stupid that we keep making the same mistake is beyond me. Why do we "need" to do this?

Here is expressed, in a perverse, neurotic way, the desire and need to belong, to be right, to know, to be legitimate oneself, to have power. It is largely done by making a social cut between those who do and those who don't, or rather who won't be allowed to, no matter what the truth and reality are.

Technical jargon and rationalization, as with these terminologies, do not make this sophisticated, a subject strictly for "professionals". All that is dressing up a very ugly, crude "pig", an old social dynamic, repeated again for the umpteenth time.

This sort of behavior reflects exactly what I have seen all my life in social dynamics, in families, schools, workplaces and everywhere else. People struggling to be in, to be popular, right, powerful, have all the answers--and to push others out. I recognize it right away and laugh at its stupidity and transparency. I expose it too. And so must we.

Not only by claiming or re-claiming our own legitimate territory, in reality, but by going farther into their own territory, exposing their lies and abuses. Fear not. Walk right in. We have nothing to lose, because we have either lost it already or are about to. They do not recognize our right to exist, in effect. Compromise isn't in order when our position is one of total denial, total loss. We hear this echoed in the Middle East and farther--all around the world.

Some will go into full attack mode, seeing the starkness of their situation. I just go into the cold stare of recognition, and, I hope, fearlessness and determination. I hope I will have some humor, a touch of humanity too, because I am being true to myself. Maybe this will serve a lifeline thrown out towards those acting in such a crazy, abusive way, to reconsider sharing life in a better way. It is an old struggle, once again, presenting itself for renewal.

Ric,

There are two threads for this issue. This one is quite long and was started in December 2009. The other was started last year, when the first DSM-5 public review was launched, in February 2010, and is here:

http://forums.phoenixrising.me/showthread.php?3062-DSM5-Ticket-back-to-Reevesville


Suzy

This forum was first made aware of DSM-5 issues by me, back in November/December 2009.

There has been time for an organized campaign to have been initiated.

I am UK based and I maintain two websites and I research and report on ICD-11 and DSM-5, and latterly, ICD-10-CM (but am also involved in other ME issues). I am a carer and I have business commitments.

Someone in the US could have created a site specifically for DSM-5 back in early 2010, from the US perspective.

No-one did.

Look at the energy that has been poured into XMRV related threads on this forum. There is energy on these forums that could be tapped into.

I said this 12 months ago.

There are people on this forum who could be compiling lists of US and international medical professionals, clinicians, psychiatrists, lawyers, AHPs etc and contacting them.

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Hi Suzy,

This is very shocking. Especially when you think of the extent to which other stakeholders have participated.

It is deeply troubling to me, that this was prompted back in 2009 and more so, that CFS orgs have NOT ACTED on this.

It should not be left to patients. I agree.

I have only been at this forum for a short time. I have been following your posts on the ICDs, because I have studied them in the past and I have been concerned about their review for a little while.

There are a couple of problems I think Suzy.

Firstly, your good work and efforts has obviously been over shadowed by all the politics and excitement regarding XMRV.

Secondly, the ICDs and DSMs are rather dry and dull and they can be hard for pwME CFS to follow. You provided excellent screen shots and detailed information, but I have had to go through your threads, a few times in order to absorb and follow all the information. Its tough.

People therefore gravitate to other threads and there are many here.

Still, you have obviously been diligently raising awareness on this issue here for some time.

So I think these things have deterred people and also possibly that people - just did not get the significance of what you were trying to say?


I dont really know. But I am pretty shocked that you have been promoting this for so long and no one ''got it''.

I am continually dumb founded at how advocates etc are completely ignorant about the ICDs and their importance - so it is not a suprise to me to learn about the lack of interest in the DSM.

As a result of all this - we are now in deep doo doo's as they say here.

However, I am very angry that the CFS orgs have done nothing about responding to this. Because as you say - this should not be left up to patients or patient advocates! What on earth are they doing??

I was also distressed to see that deadline for the reasons you expressed.

How on earth, I thought, am I going to lobby the significant parties on this in time for their voices to be heard?

I tried to console myself by believing that the CFS org's would have the matter in hand, but judging by this last post of yours, I was wrong!

Frankly Suzy, if this does not end well - the CFS orgs will be to blame. They will have sent us all into the somatic illness category in a hand basket and they might as well shut up shop and call it a day - because if they were pushing it up hill to get the illness recognised and get researchers interested, how hard do they think it will be now?

These orgs are meant to be on top of these issues. If this pans out the way its looking, and the CFS orgs failed to lobby hard, consistently and effectively here, there will be a mass exodus in memberships when members learn that they dropped the ball in the worst possible way, at a moment most crucial. They will not be easily forgiven or forgotten.

Even though I have come to this late in the peace, I am doing what I can and will continue to do so if it all goes south.

I saw RLCs requests as good ideas. A media campaign (better late than never and perhaps will put some additional pressure on the APA) would be a very good idea.

I am not suggesting you take this on board Suzy-you are obviously doing all you can -and I did not read RLCs post to you suggesting that you do this either - I saw it as a general shout out to all those reading this thread and like RLC - am encouraging those who have the skills to put this together - to hop to it.

My skills etc lie elsewhere and I have been using them quietly to see what I can do to assist and get people fired up. I have also been working on my own submission.

I am saddened that people here did not ''get'' the significance of your message and took more action earlier. Again, I assumed that there was more work going on behind the scenes, but I was obviously wrong and I am very disappointed.

You cant be expected to make a difference on your own. But thank you - for all your hard work.

Ric,

In this post, on May 5, I said:

I shall be posting this information on my Dx Revision Watch site, later today, together with the two key PDF documents, and have also posted on selected Facebook sites.

Other than that, because of personal commitments I am not going to be in a position, this year, to undertake awareness raising for this second public DSM-5 draft criteria on international forums.​

I have also published two alerts on the international Co-Cure mailing list. I have contacted a number of organizations and professionals, and yesterday, today and tomorrow, I shall be chasing all of them again.

Since you are evidently passionate about this issue, this is what I suggest you do. Open a new thread with keywords in the subject line; start it with the two links for this thread and the second thread whose URL I have given you.

If you want to link to material on my own site, that's fine. If you want to link to collected submissions from last year on my site, the link is: http://wp.me/PKrrB-AQ.

Start a list of names of patient orgs, clinicians, psychiatrists, researchers, key advocates, politicians etc and ask others to add to the thread the names of those who are being contacted, so work is not duplicated. Alternatively co-ordinate this "off list".

Over the past couple of months, I have been juggling ICD-10-CM/CFSAC, DSM-5 and ICD-11, and as I've already said, I have domestic and business commitments.

There are

4,522 members of this list many of whom are in the US and more likely to be directly affected by these DSM-5 proposals, if they are not substantially revised or rejected following the field trials.

How many US members are actively approaching US and international clinicians or lobbying patient organizations or the media?

Suzy

ME agenda said:

Over the past couple of months, I have been juggling ICD-10-CM/CFSAC, DSM-5 and ICD-11, and as I've already said, I have domestic and business commitments.

There are

4,522 members of this list many of whom are in the US and more likely to be directly affected by these DSM-5 proposals, if they are not substantially revised or rejected following the field trials.

How many US members are actively approaching US and international clinicians or lobbying patient organizations or the media?

Suzy

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Good question.

Can anyone here provide an answer?

insearchof said:

This is very shocking. Especially when you think of the extent to which other stakeholders have participated.

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But not entirely unexpected.

It is deeply troubling to me, that this was prompted back in 2009 and more so, that CFS orgs have NOT ACTED on this.

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It has been misreported on ME-CFS Forum that at the recent CFSAC meeting, Dr Wanda Jones stated that DSM-5 had received no responses, at all. This is incorrect and I hope that this statement and other misconceptions within the same post has been amended by the author or the admins. Dr Jones was referring to the official channel for submitting representations to the ICD-10-CM Development committees.

A number of international ME and CFS organizations did submit feedback to DSM-5 last year and their submissions can be read on my site; there may be other US and international patient organzations that did submit, last year, but who have not published their submissions or I have not been alerted to them.

(The following submissions from last year on my site are by: Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association [endorsed the submission of Dr Ellen Goudsmit], Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group.)

Mass. CFIDS/ME & FM has more on their site on their position on DSM-5 than any other patient org that I am aware of.

One hopes that some orgs will be submitting again this year. Last year, the public review period was 10 weeks; this year it is only six weeks - and no advance warning - the short notice is not going to help. But I am concerned, at this stage, that apart from UK Action for ME and US CFIDS, I have received no acknowledgement from any UK or international patient org for receipt of the documents forwarded to them shortly after the revised criteria were published by the APA, on May 4.

It should not be left to patients. I agree.

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It certainly should not.

I have only been at this forum for a short time. I have been following your posts on the ICDs, because I have studied them in the past and I have been concerned about their review for a little while.

There are a couple of problems I think Suzy.

Firstly, your good work and efforts has obviously been over shadowed by all the politics and excitement regarding XMRV.

Secondly, the ICDs and DSMs are rather dry and dull and they can be hard for pwME CFS to follow.

Click to expand...

DSM-5 is a complex issue. It is difficult to boil the DSM-5 issue down to short posts.

You provided excellent screen shots and detailed information, but I have had to go through your threads, a few times in order to absorb and follow all the information. Its tough.

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Yes it is; these are complex issues. But I don't own this issue. The information is up on the DSM-5 Development site and anyone who wishes to can plough through it, write their own analysis and present it here.

People therefore gravitate to other threads and there are many here.

Still, you have obviously been diligently raising awareness on this issue here for some time.?

So I think these things have deterred people and also possibly that people - just did not get the significance of what you were trying to say?

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I don't agree. I think people have got the significance, as earlier posts on these two threads and the patient submissions from the time of the last public review, evidence.

But DSM-5, as an issue, has been largely forgotten about between April, last year, when the first public review closed and this second review period.

My Dx Revision Watch site covers both classification systems (and to a lesser extent, ICD-10-CM) and ICD-11 does not have the relevance for the US that it does for the rest of the world.

A few people in the US could have set up a dedicated website and worked on a campaign over the past 12 months to approach and inform US and international clinicians and interest them in involvement, ready for the next public review period.

I dont really know. But I am pretty shocked that you have been promoting this for so long and no one ''got it''.

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I have not said that no-one "got it"?

What does concerns me was the apparent lack of interest in taking it forward, once the first public review ended, last year.

I am continually dumb founded at how advocates etc are completely ignorant about the ICDs and their importance - so it is not a suprise to me to learn about the lack of interest in the DSM.

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However, I am very angry that the CFS orgs have done nothing about responding to this. Because as you say - this should not be left up to patients or patient advocates! What on earth are they doing??

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As I say, a number of orgs did respond last year; the second draft criteria were published on May 4, which is only three weeks ago. I don't expect to see any submissions published yet, but I would like to see confirmation of intention to submit before June 15, which means that I shall be chasing those orgs that I have contacted for their position.

I was also distressed to see that deadline for the reasons you expressed.

How on earth, I thought, am I going to lobby the significant parties on this in time for their voices to be heard?

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Yes, a six week review period at short notice was a dirty move on the part of the APA. The next public review is scheduled for January-February 2012, and is said to be for two months, but the content of the DSM will most likely be a done deal by then.

It may be that the proposals will be found to be unworkable/otherwise unacceptable to those conducting field trials. Possibly the Work Group will have to shred them and start again. But we don't know. This major re-organization of the "Somatoform Disorders" for DSM-5 may not be acceptable to ICD-11 or ICD-10-CM, or it may not be possible for ICD-11 to achieve congruency with these proposals within the strictures of WHO classification rules. The ICD-11 Alpha draft as released on May 17, does not currently mirror the DSM-5 SSD Work Group proposals.

I tried to console myself by believing that the CFS org's would have the matter in hand, but judging by this last post of yours, I was wrong!

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The most we can hope for, without a great deal of work over the next three weeks, is for a handful of responses from international orgs. I appreciate that professionals making responses may not necessarily make them public.

As for a US org taking up this issue and running with it, I won't be holding my breath.

Frankly Suzy, if this does not end well - the CFS orgs will be to blame. They will have sent us all into the somatic illness category in a hand basket and they might as well shut up shop and call it a day - because if they were pushing it up hill to get the illness recognised and get researchers interested, how hard do they think it will be now?

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Quite.

These orgs are meant to be on top of these issues. If this pans out the way its looking, and the CFS orgs failed to lobby hard, consistently and effectively here, there will be a mass exodus in memberships when members learn that they dropped the ball in the worst possible way, at a moment most crucial. They will not be easily forgiven or forgotten.

Even though I have come to this late in the peace, I am doing what I can and will continue to do so if it all goes south.

I saw RLCs requests as good ideas. A media campaign (better late than never and perhaps will put some additional pressure on the APA) would be a very good idea.

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But we only have three weeks.

I am not suggesting you take this on board Suzy

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I don't have the time.

you are obviously doing all you can -and I did not read RLCs post to you suggesting that you do this either - I saw it as a general shout out to all those reading this thread and like RLC - am encouraging those who have the skills to put this together - to hop to it.

My skills etc lie elsewhere and I have been using them quietly to see what I can do to assist and get people fired up. I have also been working on my own submission.

I am saddened that people here did not ''get'' the significance of your message and took more action earlier. Again, I assumed that there was more work going on behind the scenes, but I was obviously wrong and I am very disappointed.

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I think enough people "got" the significance.

I do appreciate that launching a campaign, lobbying patient orgs, building up links with, and the interest of the media, approaching professionals for their involvement is a lot harder for sick people than signing a petition or firing off form letters to officials and that this issue has ramifications beyond the US but nevertheless, I do feel that more work could have been done on this by US folk.

Suzy