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Nederlog
Oct 25, 2011      `

And more on the DSM-5 + dr. Allen Frances



This continues yesterday's Nederlog about the DSM-5, that is quite important for persons with ME/CFS. To quote Suzy Chapman, who did a tremendous amount of work relating to it and to ME, and who has excellent sites about the subjects:

This time last year, folk were mailing me saying – I don’t know why you bother continuing to monitor DSM-5 and ICD-11, XMRV is going to render the DSM-5 proposals meaningless.

Well that was then, and this is now.

Ms. Chapman is far too smart to engage in wishful thinking (about serious subjects) and the problem now for literally millions of persons with ME/CFS and with other unexplained diseases is that they very seriously risk being declared legally mad - namely, by some tricky APA-euphemism, offered with a smile and the lie that one should not be upset being declared insane, simply because one believes on is ill: The DSM-5 will say so, and who are laymen to dare to protest Professionals ?! - as soon as the DSM-5 is in force, in the end because that is profitable to psychiatrists (by getting more patients they can enforce more expensive drugs on to, as happened with children with ADHD) and also to governmental institutions and their bureaucrats, who will feel quite free to try to force "insane" people out of the dole and into work, "in their own interests and that of our fine, free, enlightened society".

Fortunately not all is lost, and my main reason for thinking so is that the chief editors of the two previous DSMs, psychiatric doctors Spitzer and Frances, both meanwhile both professor emeritus of psychiatry, have found the courage and character in themselves too protest strongly, which I find admirable; and quite a few psychiatrists, psychologists and professional organizations have also submitted protests, that you can find the texts of or the links for on Suzy Chapman's site:

- DSM-5 and ICD-11 Watch

But to start with professor emeritus of psychiatry Allen Frances M.D., who was the chief editor of the DSM-IV. Here are links to two interesting articles based on interviews with him from the end of last year

- Inside the Battle to Define Mental Illness (in "Wired")
- What's A Mental Disorder? Even Experts Can't Agree (NPR)

Also, here are some links to interesting shorter articles and interviews:

- Psychiatrists Propose Revisions to Diagnosis Manual (PBS)

This is an interview with psychiatric doctors Schatzenberg and Frances on the merits of the DSM-5.

- The unreliability of the APA's DSM of Mental Disorders

This is from a site with the interesting title "Sue My Psychologist" (*) and is an interesting overview of the various DSMs, with bits like the following, quoted in the order of appearance, and with only the numbers for the notes left out:

Though it has become very influential since it first appeared in 1952 (when it only contained 112 disorders), there is one crucial test the DSM has never passed: scientific validity.  In fact, after more than 50 years of deception, broad exposure is now being given to the unscientific and ludicrous nature of this “943-page doorstop.”

Despite a growing consensus of people who see the DSM for what it is—a purely subjective work of no scientific substance or authority—it is still accepted in the legal system as being a scientific work that catalogs descriptions of mental disorders as if they were real medical diseases on the order of cancer or diabetes.

It is strongly suspected that the acceptance of DSM data in the American courtroom is not the product of an informed understanding of DSM by legal authorities but rather an unevaluated acceptance or deference to testimony by psychiatric/psychological experts who neglect to inform judges and others that what they cite for the validation of their testimony (DSM) is a tool of admitted unreliability.  Were the true nature of the DSM broadly known to judges and other legal authorities, one has to wonder how much longer its forensic use would be allowed.

(...)

A 1994 study conducted by researchers from UCLA and the California State University at Sacramento addressed how the DSM-III was supposed to have been revised, updated, etc. to the result of increased diagnostic reliability. However, the study concluded that, “…there is still not a single multi-site study showing that DSM (any version) is routinely used with high reliability by regular mental health clinicians.  Nor is there any credible evidence that any version…has greatly increased its reliability beyond the previous version.”

DSM-V

The fifth edition of DSM is planned for release in 2013.  Since the announcement in 2007 of the individuals chosen to lead each DSM “work group” (groups which concentrate on a single category of disorders, such as depressive disorders), it has been garnering continuous criticism for the widening inclusion of a new series of so-called behavioral addictions to shopping, sex, food, videogames, the Internet and so on.  The contention of many is that the DSM’s developers are seeking to label all manner of normal emotional reactions or human behavioral quirks as mental disorders—thereby falsely increasing the numbers of “mentally ill” people who would then be prescribed one or more drugs that carry all manner of serious warnings.

Such concerns are being expressed inside the profession:  “Each of these proposals [to label behavioral addictions as mental disorders] has the potential for dangerous unintended consequences by inappropriately medicalizing behavioral problems, reducing individual responsibility and complicating disability, insurance, and forensic evaluations” said Allen Frances, Chairman of DSM-IV.  “Psychiatry should not be in the business of inadvertently manufacturing mental disorders.”

Quite so - and as I said, I find this courageous and honorable on the part of dr. Frances, who meanwhile is 69 and could also enjoy his pension and pretend he is not concerned with the DSM-5, though he is a psychiatrist.

Next, here he is himself, quoted from a pdf (93 Kb) that I was sent with the title:

A Warning Sign on the Road to DSM=5:
Beware of its Unintended Consequences

                     Allen Frances, MD

This seems to be from 2009, and dr. Frances writes in his last paragraph:

This is the first time I have felt the need to make any comments on DSM-V.

and I can't see from the file I have if and when and where it was published, but I do like it, and put it on my site, where you can find it under the link, e.g. in case you have ME/CFS but are forced to plead in some court that you are ill, not insane.

Again I quote in the order it appears in the file, indicating by ellipsis where I skip. I once more leave out the numbers for the notes, and also I have replaced some occurences of "DSM-V" by "DSM-5" and corrected a typo ("5)" instead of "6)":

The work on DSM-5 has, so far, displayed an unhappy combination of soaring ambition and remarkably weak methodology. First, let's expose the absurdity of the DSM-5 claim that it will constitute a "paradigm shift" in psychiatric diagnosis and indicate the dangers inherent in pursuing this false goal. The simple truth is that descriptive psychiatric diagnosis does not need and cannot support a paradigm shift. There can be no dramatic improvements in psychiatric diagnosis until we make a fundamental leap in our understanding of what causes mental disorders. The incredible recent advances in neuroscience, molecular biology, and brain imaging that have taught us so much about normal brain functioning are still not relevant to the clinical practicalities of everyday psychiatric diagnosis. The clearest evidence supporting this disappointing fact is that not even one biological test is ready for inclusion in the criteria sets for DSM-5.

So long as psychiatric diagnosis is stuck at its current descriptive level, there is little to be gained and much to be lost in frequently and arbitrarily changing the system. Descriptive diagnosis should remain fairly stable until, disorder by disorder, we gradually attain a more fundamental and explanatory understanding of causality.

Remember that there has been only one paradigm shift in psychiatric diagnosis in the last 100 years -- the introduction of operational criteria sets and the multiaxial system in the DSM-III. With these methodological advances, DSM-III rescued psychiatric diagnosis from unreliability and the oblivion of irrelevancy. In the evolution of descriptive diagnosis, DSM-III-R and DSM-IV were really no more than footnotes to DSM-III and, at best, DSM-V could only hope to join them in making a modest contribution. Descriptive diagnosis is simply not equipped to carry us much further than it already has. The real paradigm shift will require an increase in our knowledge -- not just a rearrangement of the furniture of the various descriptive possibilities.

(...)

Undoubtedly, the most reckless suggestion for DSM-5 is that it include many new categories to capture the milder subthreshhold versions of the existing more severe official disorders. The beneficial intended purpose is to reduce the frequency of false negative missed cases?thus improving early case finding and promoting preventive treatments. Unfortunately, however, the DSM-5 Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM-5 may flood the world with new false positives. The reported rates of DSM-5 mental disorders would skyrocket, especially since there are many more people at the boundary than those who present with the more severe and clearly "clinical" disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments -- a bonanza for the pharmaceutical industry but at a huge cost to the new false positive "patients" caught in the excessively wide DSM-5 net. They will pay a high price in side effects, dollars, and stigma, not to mentions the unpredictable impact on insurability, disability, and forensics.

(...)

This is a drug company's dream come true. They would undoubtedly find ways of penetrating the huge new  markets with medications having largely unproven benefit and very substantial side effects. Also to be considered carefully are the always possible unforeseen problems caused by stigma and the unforeseen misuse of the new diagnoses in forensic, disability, and insurance settings.

(...)

A third category of DSM-5 innovation would create a whole new series of so-called "behavioral addictions" to shopping, sex, food, videogames, the Internet, and so on. Each of these proposals has received little research attention, and they all have the potential for dangerous unintended consequences, by inappropriately medicalizing behavioral problems, reducing individual responsibility, and complicating disability, insurance, and forensic evaluations. None of these suggestions are remotely ready for prime time as officially recognized mental disorders.

We believed that the more eyes and minds that were engaged at all stages of DSM-IV, the fewer the errors we would make. In contrast, DSM-5 has had an inexplicably closed and secretive process. Communication to and from the field has been highly restricted. Indeed, even the slight recent increase in openness about DSM-5 was forced on to an unwilling leadership only after a series of embarrassing articles appeared in the public press. It is completely ludicrous that the DSM-5 Workgroup members had to sign confidentiality agreements that prevent the kind of free discussion that brings to light otherwise hidden problems. DSM-5 has also chosen to have relatively few and highly selected advisors. (..)

The secretiveness of the DSM-5 process is extremely puzzling. In my entire experience working on DSM-III, DSM-IIIR, and DSM-IV, nothing ever came up that even remotely had to be hidden from anyone. There is everything to gain and absolutely nothing to lose from having a totally open process. Obviously, it is much better to discover problems before publication -- and this can only be done with rigorous scrutiny and the welcoming of all possible criticisms.

(...)

In summary, then, I have little confidence that the DSM-5 leadership will do the kind of careful risk/benefit analysis of each proposed change that is necessary to avoid damaging unintended consequences. My concerns arise from:

1) their ambition to achieve a "paradigm shift" when there is no scientific basis for one 2) their failure to provide clear methodological guidelines on the level of empirical support required for changes; 3) their lack of openness to wide scrutiny and useful criticism; 4) their inability to spot the obvious dangers in most of their current proposals; 5) their failure to set and meet clear timelines; and 6) the likelihood that time pressure will soon lead to an unconsidered rush of last minute decisions.

The full text linked above is well worth reading, and I can't recall reading a professor of psychiatry I agree more with, at least since reading Warren S. McCulloch, who got so upset by the "science" he professed that he left it to be one of the founders of cybernetics.

Indeed, since it is quite relevant here is a link to

W.S. McCulloch: The Past Of A Delusion (pdf, 319 Kb)

Finally, turning back to dr. Frances, here is a short piece published yesterday on the site of Psychology Today, in his blog there that's called "DSM5 in Distress"

Several divisions of the American Psychological Association have just written an open letter highly critical of DSM 5. They are inviting mental health professionals and mental health organizations to sign a petition addressed to the DSM5 Task Force of the American Psychiatric Association. You can read the letter and sign up at http://www.ipetitions.com/petition/dsm5/ It is an extremely detailed, thoughtful and well written statement that deserves your attention and support.

Actually, I do not think it is well written, nor extremely detailed. But it is well intended and the subject matter is important, so I will also provide a link to what I think is a better written document, namely by the British Psychological Society, from June this year.  It explains point by point, in decent English, also for laymen, what's wrong with the DSM-5 from the point of view of informed and concerned psychologists:

- Response to the American Psychiatric Association:
  DSM-5 Development (pdf 125 Kb)

Back to dr. Frances text:

The letter summarizes the grave dangers of DSM 5 that for some time have seemed patently apparent to everyone except those who are actually working on it. The short list of the most compelling problems includes: reckless expansion of the diagnostic system (through the inclusion of untested new diagnoses and reduced thresholds for old ones); the lack of scientific rigor and independent review; and dimensional proposals that are too impossibly complex ever to be used by clinicians.

This a good summary, except that I fear that the dimensional proposals will be used, since psychiatrists in majority seem to just love obfuscation, especially since this will make it impossible to falsify psychiatry on the ground of the DSM-5's dimensional teachings. Both obfuscations and a multitude of - vague, arbitraruy - "dimensions" are major strengths for those who know they are cheats, and also for the greater portion who don't know, but are dumb believers in The Power Of Psychiatry. Indeed, it's just the same in religion, politics and philosophy, after all.

The American Psychiatric Association has no special mandate or ownership rights giving it any sovereignty over psychiatric diagnosis. APA took on the task of preparing DSM's sixty years ago because it then seemed so thankless that no other group was prepared or willing to do it. The DSM franchise has stayed with APA only because its products were credible enough to gain widespread acceptance. People used the manual only because it was useful.

I am afraid not, or only in the way the Bible is useful for Christian moralists: Lots of standard references, quotes and prose for the faithful. And dr. Frances seems to miss how much of psychiatry is like a faith - which is a bit odd, since he must know at least as well as I do how many schools there are in it, and how excessive and mutually contradictory their claims - and see dr. McCulloch, in the above link, on The Past Of A Delusion, incidentally 60 years old this year.

DSM 5 has strained that credibility to the breaking point and (unless radically changed) will be much more harmful than useful. We have reached a turning point that will soon become a point of no return. A near final version of DSM 5 must be ready by next spring and all final wording will be set in stone within a year. Time is running out if DSM 5 is to be saved from itself.  

I am afraid that this also is true of the DSM-IV, but indeed it is honorable dr. Frances spoke out against some of its more awful consequences, and I also believe that both he and dr. Spitzer, the chief editor of the DSM-III meant and mean well, even though I find much to disagree with their work.

However, I do not believe the editors of the DSM5 mean well, for many reasons Frances himself has detailed, notably the secrecy of its writing and the unscientific nonsense of its innovations.

DSM 5 has strained that credibility to the breaking point and (unless radically changed) will be much more harmful than useful. We have reached a turning point that will soon become a point of no return. A near final version of DSM 5 must be ready by next spring and all final wording will be set in stone within a year. Time is running out if DSM 5 is to be saved from itself.  

I fear thay it won't be and that it will be printed, mostly as its editors have already written it. Then there will be a media campaign, with lots of APA spokesmen pretending psychiatry at long last is a real biomedical science, and that will be widely accepted, because most folks - journalists, judges, lawyers, average readers of papers etc. - will not have the requisite knowledge to weigh these false claims rationally.

And then what happens is up for grabs: A really good lawyer, like Clarence Darrow, could break the DSM-5 to smithereens in a court case, provided he got the time and the media attention, and also because there will be opponents from psychologists and some psychiatrists as well.

Rescue attempts and pushback are coming from numerous directions and are fast gaining in momentum. The American Psychological Association's petition was preceded by an even harsher critique by the British Psychological Society. The Society of Biological Psychiatry has wondered why we need a DSM 5.  Experts in personality disorder have universally decried the proposed revisions in DSM 5. And the American Counseling Association will  soon weigh in with its own statement.

The link to the British Psychological Society submission is above, and for your convenience here. This is a good piece of work. It is somewhat pleasing that not all psychologists are fools, and a bit counterintuitive for me since much of the stuff used in British universities for educating psychologists that I've seen is quite bad. (*)

Meanwhile DSM 5 has lived in a world that seems to be hermetically sealed. Despite the obvious impossibility of many of its proposals, it shows no ability to self correct or learn from outside advice. The current drafts have changed almost not at all from their deeply flawed originals. The DSM 5 field trials ask the wrong questions and will  make no contribution to the endgame. 

Yes, and that has nothing to do with real science and is much like a papal committee.

But the DSM 5 deafness may finally be cured by a users' revolt. The APA budget depends heavily on the huge publishing profits that accrue from its DSM sales. APA has ignored the scientific, clinical, and public health reasons it should omit the most dangerous suggestions  - but I suspect APA will be more sensitive to the looming risk of a boycott by users.

Actually, I've got an idea:

The BPS and others who are concerned in theory should be quite capable to roll their own, and indeed try to generate income from that, and also have three major motives - at least - as well, apart from a potential financial interest:

First, the DSM-5 is not real science. Second, the DSM-5 is really dangerous to patients of many kinds, and to public health in general. Third, the language, definitions, and categorial system of the DSM-5 are pretty awful, pretentious, silly, misleading, empirically unfounded, and dangerous for whoever is judged in its terms.

So I'd say: BPS, go for it! Write a good B-DSM, and get rich, by doing some real science and to defend patients and public health! After all, you're scientists and you have a personal, financial, intellectual and civic interest!

Then again, if they judge the task too heavy: Intellectually, morally, scientifically, medically, forensically, and stylistically the DSM-5 is a clear epic failure, and very dangerous as well, and professionals in either psychology or psychiatry, if they are worth the money they earn, should be able to write a much better manual than the DSM-5, in better English, and with a similar purpose. Indeed, I'd guess they might start from the DSM-III. And if dr. Frances is right, this might become a money maker as well.

Alternatively, it might be some sort of Work In Progress, by concerned psychologists, psychiatrists, lawyers, medical doctors, social workers, perhaps indeed a Wiki, like the Wikipedia, but restricted to non-anonymous persons with relevant degrees, all set up by health and legal  professionals as a scientific and realistic alternative to the DSM-5.

I do believe that may be feasible and worthwhile. It may not succeed, but since the DSM-5 really is BOTH a bunch of intellectual and moral crap AND almost certainly exceedingly ill written, it seems to make a good chance if only it is better and clearer English, simply because lots of people seem to need or want some sort of bible or comprehensive handbook, and rather have others think for them than think for themselves.

Here are best case and worst case scenarios. Best case: APA opens up DSM 5 to external, independent review and only those suggestions that pass muster are included. DSM 5 becomes safe, usable, and widely used

That seems about as likely to me as the Vatican admitting there is no virgin birth.

Worst case: DSM 5 stumbles along blindly as it has and includes most or all of its harmful suggestions. DSM 5 loses its status as a useful and standard guide to psychiatric diagnosis, creating an unnecessary and unfortunate babel of diagnostic practice and research habits. And the American Psychiatric goes broke.

In view of the huge successes of very many totally idiotic religions and political ideologies this too is quite unlikely. What dr. Frances really misses, it seems, but then he indeed is or was one of its high priests, is how much most of psychiatry was and is like religion, in its claims, practices, verbiage, and its following.

The APA Trustees and Assembly have thus far been almost completely and puzzlingly  passive in exercising their governance role over DSM 5. I believe they can wait no longer if they are to fulfill their fiduciary responsibility to the public, to the mental health field, and to their own membership. It is pretty much now or never.

No, I don't think so and I think the APA's leadership has very probably chosen for money and power rather than for science and morality. So  I expect it will be a protracted struggle, taking years, and the best possibilities for success against the DSM-5 and the APA that I can see are (1) that e.g. the BPS or an international group of concerned health-professionals and legal professionals rolls its own: It's not that difficult, and if I were healthy I could do it myself - I mean a first version, say the DSM-5 minus idiocies, verbage and bullshit, in decent English - indeed much as dr. Bob Spitzer seems to have done the DSM-III, from his own working room with his own typewriter, and (2) that some good lawyers get a good legalistic criticism set up, to the effect that the DSM-5 is not science but flimflam that the courts should not use it to come to any legal decisions, just as they should not use Christian theology, even if they believe in it: It is not real science, but faith, and its professionals are not real scientists, and cannot be believed about their own faith, for all sorts of human-all-too-human reasons.

-----------------------------------------------------

(*) As it happens, I do have an M.A. in psychology.


P.S. Corrections, if any are necessary, have to be made later.
 


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


1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
3.  Hillary Johnson The Why
4.  Consensus of 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)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

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:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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