May 12, 2011

                                                            me+ME: ME Awareness Day and the DSM-5

As it happens, it is ME Awareness Day today in the midle of ME Awareness Week.

As it also happens, I am not a person who is fond of scheduled social events, especially not if this comes with a need to posture socially 'to be with it', though I agree scheduled social events may be quite useful, and I certainly think that it would be very nice indeed if (1) more research funds are allotted to biomedical research into the cause(s) of ME/CFS and if (2) patients with ME/CFS, especially those who have severe ME or have it a long time get the medical and social help they are entitled to as ill persons.

Since not getting such help when one is ill is to me a moral, legal and human rights issue, here is a link to the declaration of human rights, that I put on this site a year ago to the day, in both Dutch and English, with an added indication of the human rights that were broken in my own case, although this is also related to other causes, that have to do with me, rather than ME, and with the declines of civilization, education and public morality in Amsterdam and Holland, although the ME made it impossible to escape so much that ruined my rights:

Next, the DSM-5:

One of the great dangers that threatens everybody with ME, who is not very rich, and therefore must depend on the decisions and rulings of governmental and municipal bureaucracies, is the DSM-5, that I wrote repeatedly about last year e.g. here

If you check out that last link, you find some very fine text by Suzy Chapman, who invested a great amount of work and a very fine intelligence in finding things out about the DSM-5 and about the ICD-11:

  • DSM-5 and ICD-11 Watch (<- Suzy Chapman's site)

Before going on, let me also clearly note that especially the contents of the DSM-5 to be - that is, the Diagnostic Manual of the American Psychiatric Association, widely seen and used as if it were A Bible, beyond doubt and beyond reasonable appeal, not only by psychiatrists and psychotherapists, but also by bureaucrats, psychologists, lawyers, judges and politicians - threatens not just persons with ME, but virtually anybody who will fall ill of virtually any disease, when and where the DSM-5 will be used to 'diagnose' people, which is in the US and in many other countries.

And it is not just me who is saying this sort of things: The chief editors of the last two editions of the DSM, namely Dr. Frances of the DSM-IV and Dr. Spitzer of the DSM-III, are deeply worried and upset about it, in no uncertain terms also.

Here is Dr. Frances on the subject, interviewed by Dr. Gary Greenberg in Wired at the end of last year:

  • Inside the Battle to Define Mental Illness

The articke starts thus:

Every so often Al Frances says something that seems to surprise even him. Just now, for instance, in the predawn darkness of his comfortable, rambling home in Carmel, California, he has broken off his exercise routine to declare that “there is no definition of a mental disorder. It’s bullshit. I mean, you just can’t define it.” Then an odd, reflective look crosses his face, as if he’s taking in the strangeness of this scene: Allen Frances, lead editor of the fourth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (universally known as the DSM-IV), the guy who wrote the book on mental illness, confessing that “these concepts are virtually impossible to define precisely with bright lines at the boundaries.” For the first time in two days, the conversation comes to an awkward halt.

But he recovers quickly, and back in the living room he finishes explaining why he came out of a seemingly contented retirement to launch a bitter and protracted battle with the people, some of them friends, who are creating the next edition of the DSM. And to criticize them not just once, and not in professional mumbo jumbo that would keep the fight inside the professional family, but repeatedly and in plain English, in newspapers and magazines and blogs. And to accuse his colleagues not just of bad science but of bad faith, hubris, and blindness, of making diseases out of everyday suffering and, as a result, padding the bottom lines of drug companies. These aren’t new accusations to level at psychiatry, but Frances used to be their target, not their source. He’s hurling grenades into the bunker where he spent his entire career.

For more, see Inside the Battle to Define Mental Illness: it is quite interesting and well done - and please note that this also concerns your rights and safety if you do not have ME, for it concerns the rights of everyone who will fall ill in a country where the ill are to be diagnosed by medical or bureaucratical or legal people using the DSM-5, or basing decisions on its classifications.

If men like Dr. Frances and Dr. Spitzer - the chief editors of the last two editions of the DSM - find it in them to protest, anyone has cause to worry deeply.

Here then is Suzy Chapman, writing earlier today and copied by me as I received it, addressing the dangers of the DSM-5 and the ICD-10-CM. I have changed nothing, except that I added some bold emphasis to mark what you can do.

You find the background of the following explained in On the DSM-5TM  and on Suzy's sites, mentioned in the last link and listed below:

From Suzy Chapman for 

May be reposted

12 May 2011 

The second public review of draft proposals for DSM-5 criteria is now open and runs from May to 15th June.

If the most recent proposals of the “Somatic Symptom Disorders” Work Group gain DSM Task Force approval, all medical diseases and disorders, whether “established general medical conditions or disorders like diabetes” or conditions presenting with “somatic symptoms of unclear etiology” will have the potential for a bolt-on diagnosis of a “somatic symptom disorder”, if the criteria are felt to be met.

CFS and ME patients, diagnosed or awaiting diagnosis, may be especially vulnerable to highly subjective criteria and difficult to quantify constructs such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety”, “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome” with “health concerns [that] may assume a central role in the individual’s life, becoming a feature of his/her identity and dominating interpersonal relationships.”

The issue of the longstanding proposal for the coding of CFS in ICD-10-CM was tabled for an hour long discussion on Day One of the Spring CFSAC Meeting, held this week, on 10 May.  I'd like to thank CFSAC Chair and committee for tabling this discussion, following which a new Recommendation to HHS was voted in favour of.

Retaining CFS in the R codes under:

             R53.82 Chronic fatigue, unspecified

                Chronic fatigue syndrome NOS
                Excludes1: postviral fatigue syndrome (G93.3)

in the "Signs, symptoms and ill-defined conditions" chapter of ICD-10-CM may render patients more vulnerable to the proposals of the DSM-5 "Somatic Symptom Disorders" Work Group for the revision of the existing DSM "Somatoform Disorders" categories. 

This and the implications for ME and CFS patients of the latest proposals of the DSM-5 "Somatic Symptom Disorders" Work Group were also discussed by CFSAC committee members as part of the discussion on ICD-10-CM coding and the upcoming Partial Code Freeze, in October.

Who can submit comment to DSM-5 Development? 

The APA is inviting all stakeholders to submit comment and feedback on the draft framework for DSM-5 and the latest proposed revisions to DSM diagnostic criteria – that's patients and families, patient advocates and patient organizations as well as clinicians, researchers, allied health professionals, lawyers and other end users.

It’s important that patients who are able to submit comment do so, but please also encourage patient organizations, informed clinicians, researchers, psychiatrists, psychologists and allied health professionals to submit feedback, too.  Last year, the APA received over 8000 comments from stakeholders across all DSM categories.

Three new posts on DSM-5 and ICD-11 Watch site:

1] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 1)
Q and A. Shortlink Post #75:

2] What are the latest proposals for DSM-5 "Somatic Symptom Disorders" categories and why are they problematic? (Part 2)
Shortlink Post #77:

3] Registering to submit comment in the second DSM-5 public review of draft criteria
Shortlink to Post #78:

Submissions in last year's DSM-5 public review of proposals for draft criteria can be read here:

Suzy Chapman

The shortlinks above are to items on Ms Chapman's site, and you are herewith invited to make your voice heard by the APA, whether you are a patient, a family-member, a doctor, a psychologist, or simply a concerned citizen.

P.S. Corrections, if any are necessary, have to be made later.
-- May 13, 2011: Corrected some typos. Changed the background to fixed in Firefox.

As to ME/CFS (that I prefer to call ME):

1. prof. Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
3. Hillary Johnson The Why
4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6. William Clifford The Ethics of Belief
7. Paul Lutus Is Psychology a Science?
8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon insufficient evidence".
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

Maarten Maartensz (M.A. psy, B.A. phi)

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