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  May 12, 2012                  

ME+DSM5: Phoenix Falling + Dr Frances Rising

The mild and the long-suffering may suffer forever in this world. As long as the patient will suffer, the cruel will kick.

(The Reverend Sidney Smith.)

Today it is international awareness day for ME/CFS and there are two Nederlogs: This one is about the following to subjects,

        1. Phoenix Falling?
          2. Dr. Frances Rising!

and the next one is a repeat of May 12, 2010, which was about Human Rights, that may become very important next year, if and when the DSM-5 may be introduced, that threatens the lives - the chances, the status, the incomes, the happiness, the wellbeing - of many millions who from that time onwards will not be regarded or classified as ill, but as insane or malingering, and run the very serious risk of being driven to suicide by the frightful combination of bureaucrats and psychiatrists.

Perhaps I will make some alterations to the file of May 2010, but probably not, as little has changed, except for the worse, at least for nearly all patients with ME.

1. Phoenix Falling?

Phoenix Rising is a forum for patients with ME that I have been writing about since the end of 2009; have been a member of until one of the more fascistic respect rats there and one of the sick moderators told me I have to respect the first ass-hole and got my foreskin thrown in my face by the second, on the Dutch National Day of Commemoration, after which I bowed out, also because the tone and level of that forum are pretty sickening, indeed with some exceptions, since not all persons are morally and intellectually as braindead as the ones mentioned.

So I have kept following and mentioning it, but that may very soon be over:

Starting yesterday, the Phoenix Forums changed the software they use to run and present the forums from software by something called V-bulletin, to software by something called XenForo.

V-bulletin was pretty awful for quite a few reasons I'll summarize by saying that it had been open source freeware till Cort Johnson started using it for Phoenix - or so it seems to me, though I may be mistaken. At any rate, it turned commercial, or at least one or a few of its former developers did, of course with promises that quite a few of the bad, stupid or ugly features of V-Bulletin would be repaired, which never happened, and which anyway I don't like, for I want free and open software, and not closed and secret software.

In any case, I looked for two years at V-bulletin, and didn't like it at all, and found it also horrible to work with when I wrote for Phoenix in the first 4 months of 2010, as its editing software for members was very unintuitive and made many contributors loose their contributions.

Also, it didn't look well, and had some crazy quirks besides its editor, notably its searches, but apart from all that and a lot more, it mostly worked.

Then there was another developer of the previously open and free V-bulletiin, who thought he could do better or earn more (I don't know) and made from the previously free and open source code something called XenForo - I think - that yesterday was instituted as the forum software for what is still called "Phoenix Rising" and now looks like Phoenix Falling.

I'll explain myself:

On the positive side, it looks better: There is a new logo, less ugly than the old one; the forum self looks a bit better and has no advertising of the V-bulletin name, or the XenForo name, but I find it totally useless and very frustrating because it doesn't work as it should for me - apart from a lot of other criticism I may write out later:

The "What's New" section does not lead one to the last post that appears in the list of the "What's New" section: It links either to the first item in the thread or to the writer of the post, and not to the post itself.

Either that is an innovation of XenForo Ltd. that cannot be undone, and makes the forum completely useless as a forum; or else that is a mistake in setting that should be rapidly undone; or it is "a feature" only persons like me or those who are not members are regaled with, in which case I'll turn very unfriendly about the forum, the software and their owners.

Anyway... if this "feature" remains in place - and the "feature" is currently in place on both Linux and Windows for this writer - Phoenix Rising deserves to fall and to fall fast, and I'll help it falling with some appropriate choice words, that then will refer back to two years ago, when I ran into fascist terrorism by a prime intellectual and moral degenerate and - what strongly smells and ssmelled like - antisemitism on that forum by a moderator, and therefore left it, because its owner tacitly approved, and saw no reason whatsoever to make excuses.

2. Dr. Frances Rising!

I have been writing rather a lot about the DSM-5 lately, because I fear that will function as a death-trap for many ill people, not just with ME/CFS but with virtually any disease, especially those diseases which are today's multiple sclerosis or peptic ulcers:

Psychiatrists, bureaucrats, politicians and journalists will in great majority blame the ill for being ill; accuse them of being insane; and try to force them to work or at least kick them out of the dole, thereby effectively condemning the really ill to a horrible and slow dead in a paper box, if they make it as far as that, after having been thrown out of the dole as a malingerer or a nut-case, and after having been thrown out of their houses for not paying the rent for lack of dole.

On the forums of patients I have seen, the average intelligence is of the level that most patients seem to actively care that exactly this danger, of people with ME/CFS being discriminated and manipulated to death, gets not discussed rationally, for the only person - of 6000 or so self-claimed ill with ME/CFS patients (with an unknown proportion trolls, usually protected by the moderators, an unknown proportion of which are trolls) and advocates, I have seen only one who actively cares, and that is Suzy Chapman, who does not have ME/CFS, but is the caretaker of someone who has it.

Ms Chapman is uncommonly intelligent and rational, and paid repeatedly a heavy price for those rare human characteristics on two patients' forums for people who have ME that I followed: Trolls and moderators pounce on her in droves like so many rabid dogs, that have smelled something not having quite the correct, appropriate smell of their own pack, and complained, again and again, that "her posts are too long", "her posts are too difficult", and besides that she should f*ck off since she does not claim to be ill, like the moral and intellectual degenerates or trolls who try to "moderate" her do claim, and all while the owners of the forums sit on the side and watch it happen, and seem to be smiling very contentedly, and do absolutely nothing to stop it. [*]

I saw it happen, and knew how to explain concentration-camps, as I understood that indeed the Biblical story about the Saviour who got crucified by the very people He tried to save, or the Biblical parable about the pearls and the swines, do both hold deep insights into the motives, capacities, preferences and mental make up of average folks. But then average folks get very offended if you explain them what their own holy books they claim to believe or admire do tell about them.

In any case, Ms. Chapman somehow persisted, and still updates her site, and indeed may have helped through her site - Dx Revision Watch -  bring about something that I think is both quite good and that I had not expected myself - and I quote an excellent text by Allen Frances, published yesterday, that may eventually become legally quite important:

Diagnosing the D.S.M.
New York Times[op-ed]
May 11, 2012

At its annual meeting this week, the American Psychiatric Association did two wonderful things: it rejected one reckless proposal that would have exposed nonpsychotic children to unnecessary and dangerous antipsychotic medication and another that would have turned the existential worries and sadness of everyday life into an alleged mental disorder. But the association is still proceeding with other suggestions that could potentially expand the boundaries of psychiatry to define as mentally ill tens of millions of people now considered normal. The proposals are part of a major undertaking: revisions to what is often called the “bible of psychiatry” — the Diagnostic and Statistical Manual of Mental Disorders, or D.S.M. The fifth edition of the manual is scheduled for publication next May.

I was heavily involved in the third and fourth editions of the manual but have reluctantly concluded that the association should lose its nearly century-old monopoly on defining mental illness. Times have changed, the role of psychiatric diagnosis has changed, and the association has changed. It is no longer capable of being sole fiduciary of a task that has become so consequential to public health and public policy.  Psychiatric diagnosis was a professional embarrassment and cultural backwater until D.S.M.-3 was published in 1980. Before that, it was heavily influenced by psychoanalysis, psychiatrists could rarely agree on diagnoses and nobody much cared anyway.  D.S.M.-3 stirred great professional and public excitement by providing specific criteria for each disorder. Having everyone work from the same playbook facilitated treatment planning and revolutionized research in psychiatry and neuroscience.

Surprisingly, D.S.M.-3 also caught on with the general public and became a runaway best seller, with more than a million copies sold, many more than were needed for professional use. Psychiatric diagnosis crossed over from the consulting room to the cocktail party. People who previously chatted about the meaning of their latest dreams began to ponder where they best fit among D.S.M.’s intriguing categories. The fourth edition of the manual, released in 1994, tried to contain the diagnostic inflation that followed earlier editions. It succeeded on the adult side, but failed to anticipate or control the faddish over-diagnosis of autism , attention deficit disorders and bipolar disorder in children that has since occurred.

Indeed, the D.S.M. is the victim of its own success and is accorded the authority of a bible in areas well beyond its competence. It has become the arbiter of who is ill and who is not — and often the primary determinant of treatment decisions, insurance eligibility, disability payments and who gets special school services. D.S.M. drives the direction of research and the approval of new drugs. It is widely used (and misused) in the courts.  Until now, the American Psychiatric Association seemed the entity best equipped to monitor the diagnostic system. Unfortunately, this is no longer true. D.S.M.-5 promises to be a disaster — even after the changes approved this week, it will introduce many new and unproven diagnoses that will medicalize normality and result in a glut of unnecessary and harmful drug prescription. The association has been largely deaf to the widespread criticism of D.S.M.-5, stubbornly refusing to subject the proposals to independent scientific review.  Many critics assume unfairly that D.S.M.-5 is shilling for drug companies. This is not true. The mistakes are rather the result of an intellectual conflict of interest; experts always overvalue their pet area and want to expand its purview, until the point that everyday problems come to be mislabeled as mental disorders. Arrogance, secretiveness, passive governance and administrative disorganization have also played a role.

New diagnoses in psychiatry can be far more dangerous than new drugs. We need some equivalent of the Food and Drug Administration to mind the store and control diagnostic exuberance. No existing organization is ready to replace the American Psychiatric Association. The most obvious candidate, the National Institute of Mental Health, is too research-oriented and insensitive to the vicissitudes of clinical practice. A new structure will be needed, probably best placed under the auspices of the Department of Health and Human Services, the Institute of Medicine or the World Health Organization.

All mental-health disciplines need representation — not just psychiatrists but also psychologists, counselors, social workers and nurses. The broader consequences of changes should be vetted by epidemiologists, health economists and public-policy and forensic experts. Primary care doctors prescribe the majority of psychotropic medication, often carelessly, and need to contribute to the diagnostic system if they are to use it correctly. Consumers should play an important role in the review process, and field testing should occur in real life settings, not just academic centers.  Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will always be an essential part of the mix but should no longer be permitted to call all the shots.

I have quoted it in extenso, because I think it is important for everyone who runs the risk of being judged bureaucratically/medically as being fit to work, which involves tens of millions of people, many of whom are bound to be very ill, and risk being driven to their deaths as is happening already in England, as seen in the last link; because I think it is courageous and moral on the part of dr. Frances; because it conforms to my own desire and recommendations, though I do not think dr. Frances reads me; because it certainly is one of the really good things Suzy Chapman's work over the last three years has contributed to; and because I wanted to make comments on it - but then these will have to wait till later, in part because I lost a lot of time on the presently useless Phoenix Forums.

Also, I haven't seen any member complain there, but then I can't find my way in it, and I would not be amazed at all if this "feature" is in place to fend off folks who are intellectually and morally better than the dense lot ruling the roost there, and the trolls who set its tone - which is a great pity for the millions of really ill, and which is likely to harm many, because the situation on Phoenix Rising has been contrived so that the morons and the trolls can set the policies of the forums, but which probably will not have much effect on me, because I have my site, and am anyway too old and too sharp and too different from ordinary men to have to fear the very great dangers that face those younger than me who are ill with ME/CFS.

For more on your rights, on paper, see the next file: ME and Human Rights.


[*] Wikipedia, article on Edmund Burke:

"The statement that "The only thing necessary for the triumph of evil is for good men to do nothing" is often attributed to Burke. Burke never said this but, in 1770, he wrote in Thoughts on the Cause of the Present Discontents that "when bad men combine, the good must associate; else they will fall, one by one, an unpitied sacrifice in a contemptible struggle."

Also, "The only thing necessary for the triumph of evil is for bad men to gain power, by their usual means of lying and posturing and pretending" and "since there are fewer good than bad and indifferent men, and fewer smart men than common and stupid men, chances are nearly always nearly everywhere that the bad abuse, lock up or murder the good".


Corrections, if any are necessary, have to be made later.
-- May 13, 2012: Corrected some typos and unclarities.


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

1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 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 understa, but nds 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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