Nederlog

 

January 2, 2011

 

ME + me: 33rd year of ME, summary 2010, DSM-5

 

  "Enjoy and give pleasure, without doing harm to yourself or to anyone else - that, I think, is the whole of morality."
   -- Chamfort
  "If mankind had wished for what is right, they might have had it long ago. The theory is plain enough; but they are prone to mischief, 'to every good work reprobate.'"
   -- Hazlitt + Heidelberger Katechismus


It's the second of January and the eighth year of Nederlog and there is today another summary of 2010, mostly in continuation of yesterday's
Nederlog 2010 overview: commented selections (links); a brief note on having ME for the 33rd year, and a quotation + comments relating to the DSM-5.

Sections:

1. The 33rd year of ME for me
2. A brief summary of the additions to the site in 2010
3. An interview about the DSM-5 with my comments

1. The 33rd year of ME for me

It's a somewhat melancholy business, but yesterday I started on my 33rd year of ME, since I fell ill on January 1, 1979, with what briefly afterward was diagnosed as EBV, that didn't go away for all these years, or that is how it seems.

As I outlined repeatedly last year - and see Nederlog 2010 overview: commented selections (links) - in which I learned much about and around ME that I didn't know before, what most upsets me about this is not being ill for all that time but especially

  • Getting no help whatsoever all these 33 years anybody else with another disease - one that is not classified as "unknown", from which it then concluded it must be the fault of the patient dysfunctional belief systems that he believes he is ill (e.g. while, as was the case for me and my ex, he is studying psychology at university, and is doing very well at it, and has no advantage whatsoever to pretend or believe and behave as if he is ill).
     
  • Learning that 17 million genuinely ill people, who also for well over 99%, don't look, write, behave or speak like mad men and mad women have been systematically and on purpose been lied about by a number of psychiatric pseudoscientists, mostly but not only located in the US at the CDC (Reeves, Jones); in England at King's College and Bart's (Wessely, White); and in Holland at Radboud Universiteit, Nijmegen (Bleijenberg and Van der Meer).

I merely mention this here in passing, because it so happens that on January 1, 1979 I fell ill, and thereafter got 33 years of large doses of man's inhumanity to man, often delivered with evident bureaucratical or medical sadism, and always on the basis of ignorance and immorality.

There will be much more about this in this new year, for I simply do not accept that my life and chances have been much worse than my father's after surviving nearly four years of German concentration camps as a political prisoner, for which see

2. A brief summary of the additions to the site in 2010

There is a section "news on the site" on my site that I failed to maintain last year, but then did today, to the following effect, that I here quote to provide another overview

Actually, this file wasn't maintained for a year, but

Nederlog 2010 overview: commented selections (links)

gives the same information. Apart from additions to Nederlog, mostly about ME/CFS, nearly all in English one important update, that still remains to be finished, was my edition + my notes of

Wittgenstein's Tractatus Logico-Philosophicus

Another file that is important legally and morally, at least for me in my case about ME, is

Three documents: My father's story + my story + my Human Rights

And foreigners who want to understand my relation with the University of Amsterdam can now consult these items, translated from English, and mostly published in Dutch

SPIEGELOOG-COLUMNS:

39 Questions about the  qualities of education
and government in the Netherlands

As said, most additions in 2010 were made here

Nederlog 2010

and these are nearly all concerned with ME/CFS, about and around which I learned much in 2010, for which see e.g.

ME - Resources

which is an addition to the site of 2010.

3. An interview about the DSM-5 with my comments

I wrote last year repeatedly about the DSM-5 e.g. here (also with original text by ME agenda, who has a fine site dedicated to it and the IDC-11: DSM-5 and ICD-11 watch):

Here is the text of an interview that was made for American radio with the chief editor of the DSM-IV (the predecessor of the DSM-5: meanwhile, the numbering style has changed), which can be found here in its entirety, with its original title:

It is on the site of npr, that says the following about itself:

This Is NPR

A thriving media organization at the forefront of digital innovation, NPR creates and distributes award-winning news, information, and music programming to a network of 900 independent stations. Through them, NPR programming reaches 27.2 million listeners every week.

I am just quoting, but the least I can say is that I am glad that in a country that produces such awful TV there still is radio.

Now you get the interview with my comments interspersed. I will quote in blue

What's A Mental Disorder? Even Experts Can't Agree

I said I would quote, and full quotation includes the name of the author, who probably means well. Here is my first remark:

The title is very confusing and also probably rather confused:

(1) There are quite a few schools in psychiatry, so "experts" are, in psychiatry, at best experts in their school of thought, generally dismissed by the leading lights of all other schools of psychiatric thought: Psychiatry is less a science than an art, for good psychiatrists, and there is little psychiatric claimed knowledge that is certain, and very much, in a history of little more than a 100 years, that has been found totally false in once accepted psychiatric teachings.

(2) Extreme or typical cases of madness are easy: It is not as if a decent medical doctor, whether psychiatrist or not, cannot recognize typical cases of madness, and indeed in clearcut cases, fit for sectioning, so to speak, laymen and judges can also see and hear that so and so is quite bonkers: It is the milder cases that are difficult, also and especially because psychiatrists as little as anybody else knows how the brain produces the miracle that is human consciousness.

(3) "Mental disorder" is a somewhat problematic notion, though it is accepted terminology, and is so mostly because it suggests a mind - a psyche, a soul - next and in addition to a living brain producing experience. This is acceptable everyday speech, but it is not acceptable in real science, where hypotheses of so metaphysical a kind as that of a soul - whether called "mind", "psyche", "soul", "body/mind" or what not - is not science but theology or arbitrary fiction, and namely because there is no soul to investigate empirically: There just is a brain, experiencing, possibly ill, possibly upset, certainly for the greatest part so far very ill understood.

December 29, 2010

The American Psychiatric Association's Diagnostic and Statistical Manual, or DSM, updated roughly every 15 years, has detailed descriptions of all the mental disorders officially recognized by psychiatry. It's used by psychiatrists, insurance companies, drug researchers, the courts and even schools.

I have arrived at the text, and must start with a very important point:

Apart from other logical objections I might make, the fact is that these are much less "
detailed descriptions" than a sort of operational definitions, and namely by supposedly behavourial symptoms.

At least, that was the original idea behind DSM-III, and this was done to make diagnosis more uniform, and to make research more reliable. There can something be said for it, especially given the state psychiatry was in, but not much, for a reason I'll explain below, but the reader can surmise here already: Operational definitions are misleading.

See e.g. the article

that under "operational definitions" ends thus:

Operational definitions have disappeared in physics; occasionally, however, one will still find instances of them in psychology. Philosophically sophisticated researchers avoid them in their own work and know not to take them seriously in the work of others.

Next, that the DSM is used much more widely than by psychiatrists - namely also by "insurance companies, drug researchers, the courts and even schools" - and that indeed in a biblical fashion, as if its pronouncements and rulings come from the most high,  is mostly mistaken: It is a mistake of the menu and the diner, namely of an operationalized classification schema for uniform diagnosing on the one hand, and the supposed science and analytical descriptions of diseases that produced the operationalized schema.

This is at least as much due to the APA as to those using the DSM, though it seems true that the APA, at least in the DSM-IV, warns against this. But then, if they are so well aware of the dangers, they should do more than provide a list of operational definition, and that also not in an expensive trademarked volume, but simply on the internet, and free - if they take both mental health and real science as serious as the rights of citizens to adequate information.

The definitions for some mental disorders may change in the new edition of the DSM.

But it's not without controversy: The proposed changes suggested this year have sparked a kind of civil war within psychiatry.

In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort severe social discomfort and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this," Frances says.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.

So let's first note that the chief editor of the DSM-IV regrets various things in that - and it turns out that he, indeed like the chief editor of the DSM-III, is strongly opposed to the DSM-5, as planned, and as implemented sofar.

And let me also note that in fact Frances is not much to blame, in my opinion, rather like the maker of knives can't much help the fact that some use them to harm others: What can be used, can be abused, and Frances is probably right that the diagnoses of Asperger, since the DSM-IV, were mostly mistaken when based nominally on it.

Indeed, a decent explanation follows:

"At that point I did an 'oops,' " he says. "This is a complete misunderstanding. It was distressing. Quite distressing."

Surprising Incentives

It's not that Frances doesn't think that Asperger's exists and is a real problem for some people; he does. But he also believes the diagnosis is now radically overused in a way that he and his colleagues never intended. And why, in his view, did Asperger's explode? Primarily, Frances says, because schools created a strange unintentional incentive.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

Clearly, that is a relevant fact for making that diagnosis, that indeed I did not know. And without wanting to judge Asperger's or its misdiagnosis or autism, I simply want to make the more general point that a manual like the DSM functions in a political and social context, where its pronouncements may be used and abused, and where there may be high monetary premiums related to certain kinds of diagnoses, fairly or unfairly, I hasten to add.

And people with ME know more or less the opposite happens in the case of ME: With that diagnosis, it is a virtual certainty one will get no help, essentially because there are no strong and effective patients organizations, and the pharmaceutical companies also have so far nothing to gain from patients with ME.

How the pharmaceutical companies may enter, for better or worse, now gets clarified some:

Disturbing Consequences 

Frances worried this might cause a misallocation of school resources. And Frances points to another change he made which, for him, has had even more disturbing consequences. Essentially, Frances and his colleagues made it much easier to get a diagnosis of bipolar disorder. And he says that created this incredible opportunity for drug companies.

It's a pity there is no mention of monetary sums or estimates of profits from prescribing these medicines. And this is no doubt a good example of one of the things that went awfully wrong with diagnosing.

But again this is not really the fault of the DSM - for again what can be used can be abused. It does show, though, that medicine may not be the noble pursuit of health in the interest of the patients that medical doctors like to pretend it is: It is indeed, except for the patients, about money and profit, for all healthy players involved in it, though no doubt for most morality will also be involved, somehow, and possibly honestly, in some.

Here is Frances about what happened and his conclusion from it:

"Drug companies got indications for treating bipolar disorder," Frances says. "Not just with mood stabilizers, but also with the newer antipsychotic drugs. And they began very intensive ubiquitous advertising campaigns. So the rates of bipolar disorder doubled. And lots of people got way too much antipsychotic and mood stabilizing medicines. And these aren't safe drugs."

And for Frances, the lesson of these experiences is clear. Once you put a new diagnosis in the DSM, there is no controlling what will happen to it. So there's only one thing to do:

I can well understand why Frances is distressed by this, and I find it highly commendable he stood up and spoke out about it, in public, about this case, and about the DSM-5, for such character and courage I have found far more rare among medical people than they like to pretend themselves in public, on average, and in large majority.

The problem, as it appears to me, is again that a manual like the DSM will be abused. And to understate things because of possible abuse one expects is to understate the truth, or what one believes it to be, and one should not lie in science, least of all.

So to me it seems better to make a very clear statement in the DSM what it is and is not to be used for.

I spoke above about this but should note here that, if it were done honestly - an if that's squarely in the realm of fiction - the DSM would all be free, would be on line, and would give direct links to costs, producers of medicines, and of all important financial interests and ongoing research related to the disease. Also, and importantly, it would combine operationalized symptomatology with explanatory descriptions.

Next: Since all of this can be done - or could have been done - since 10 years at least, if it doesn't and didn't happen, what the folks in the APA who design the DSM-5 are creating is in fact a Trade Marked bibleTM of mere symptoms, that moeover - see ME + me :  On the DSM-5 - is all based on a crazy idea of what psychiatry is like, to the effect that the doctors of the soul from the APA learn patients of all kinds and of all diseases to cope with life's problems, since everything, for the 21st Century APA, also in science, in their opinion, has a material and a spiritual side, - it is clearly done for non-scientific reasons, that may safely be taken to be monetary.

Besides, it probably is also safe to assume from this, to account for its possibility, that the large majority of the APA, educated in pomo-times, have a bad grasp of real science, and also no real interest in it. There are some "bio-medical psychiatrists" and indeed pharmacologists and neuroscientists, but most will not be psychiatrists, and have no influence in the APA.

So my own strong feeling is that rational folks do best to say that the APA with DSM-5 definitely has gone over to quackery, and psychiatry should be given up as real science, and its diagnosing bible as useless at best. (Slogan: If it is not about the body and the brain, it is not science but quackery or religion.)

As far as Frances is concerned, the new DSM is proposing too many diagnoses that are written in too broad a way, meaning that ultimately a huge number of new people will be categorized as mentally ill.

Yes, and that was already so with his DSM-IV. It probably was so with the DSM-III as well, from the way that was set up, as outlined in my first two comments above. See: Brit. Jn. Psychiatry: 78% of the British are not sane.

Good May Outweigh Bad

William Carpenter, one of the people behind the new DSM, disagrees. Carpenter works with the sickest of the sick at the Maryland Psychiatric Research Center. And from where he sits, this issue of overdiagnosis is a minor affair.

Every overdiagnosis being equal to so many hours of highly paid time for his highly educate and very moral medical colleagues, one should remember: One would not want less psychiatrists, as a psychiatrist, of course.

All around the waiting room of his office, people suffering from psychotic disorders sit in thick clothing, eyes wide, staring silently. These are the people Carpenter sees day after day people whose problems have been misidentified and mistreated for years.

What was he doing all that time? Presumably, he was trying to think:

That's why one of the changes Carpenter has proposed for the new DSM is a diagnosis he thinks will help identify people with psychosis when they are in the very earliest stages of their disease, long before they ever get to his waiting room.

"If it identifies a lot of people who otherwise would not be identified, then I would think that would be a positive good," Carpenter says.

As stated, this not a rational argument: It is purely hypothetical, and depends on a totally subjective doubly counterfactual personal opinion: "I would think that would be a positive good".

In fact, torture can be defended in just the same way.

Carpenter believes that putting this new diagnosis in the new DSM will prompt research, which ultimately could produce effective treatments.

"So there's a potential very positive benefit," he says. "It's possible that it can make a remarkable difference in the long-term trajectory of their life."

Carpenter speaks like a trained pomo psychiatrist and pseudo-scientist, for I count in the last four statements in the article: "otherwise would not", "would think", "would be", "ultimately could", "a potential", "It's possible", "it can".

That's astroturfing, also of a sickening kind - indeed one  "would think" that it "would be" a near miracle if it "ultimately could" be established that someone who formulates as woolly and as circumspectly as Carpenter "can" think rationally at all. If he is honest, that is.

The final draft of the DSM-5 won't be published until 2013. In the meantime, people like Allen Frances will agitate for the number of diagnoses and their scope to be reduced. And the small group of people in charge will face the difficult question of what to put in and what to leave out.

That's the end of the article, and one must be glad modern journalists do the difficult thinking and interpreting for one.

Anyway... I copied and commented it because I think this may shed some light on the DSM-5 and on modern psychiatry, that even with the DSM-IV manages to conclude that, according to the science of modern psychiatry, and specifically the DSM-IV, 78% of the British are not sane.

And you likely see what a blessing DSM-5 will be:

Everybody British but Her Majesty, the British Parliamentarians and the British Government will be utterly mad, across many dimensions also, Evidence Based Medicine will show... except, of course, for all and only psychotherapists and psychiatrists educated at King's College, London, who will be very glad to cure all Brits, for a while, and for a monetary consideration, of their most serious dysfunctional beliefs.



P.S. Corrections have to be added 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 (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

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