February 18, 2011


me+ME: What to do + More on the DSM-5



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."  William Hazlitt

The most important thing when ill is to never lose heart. Vladimir Lenin

Man is a toad-eating animal. The admiration of power in others is as common to man as the love of it in himself: the one makes him a tyrant, the other a slave. William Hazlitt.

I am still around but was either not well or otherwise occupied lately, whence no Nederlog for a few days.

Today a little more about ME, from a longer piece that I originally wrote and then decided to remove most of the personal remarks from, and a few more links on the DSM-5.

But first a few words about my illustrations, that open this file, that are portraits of William Hazlitt and Vladimir Lenin (last two links to Wikipedia).

1. What I want to see done about ME
2. What needs to be done
3. More on the DSM-5

You'll find the orginals when you click on the images, and will then find Lenin's likeness is a coloured drawing or painting, using a photograph as original, it seems, while Hazlitt's likeness is originally drawn by Bewick, and the left and middle picture have been mirror-imaged.

Also, this seems to me the best picture there is of Hazlitt, originally drawn in 1826. The original I used is discoloured, but I have seen one to similar effect as the above in Ronald Blythe's Penguin selection from Hazlitt's writings. The above images were produced by me with the help of some imagining software. (In the original Hazlitt is facing leftward.)

You find them here because I come from a communist background; because Lenin wrote a booklet entitled "What is to be done?"; and because I am an admirer of Hazlitt, who long before Lenin's birth knew why a project like Lenin's would fail.

1. What I want to see done about ME

What I am "fighting" for, by argument, that is: what I am arguing for - which I cannot do, as a competent, able, psychologist and philosopher on ME-forums, because someone like me is indeed dangerous to false pretenses and bullshit by owners of such forums, and by posters on such forums - is

  • that persons with ME are treated like persons with other diseases;
  • that they get disability benefits;
  • that they are not pressed into CBT or GET;
  • that they too are medically thoroughly checked (instead of being denied tests "because you have a dysfunctional belief system");
  • that persons with ME are not discriminated, defamed, slandered, and gratuitously offended by being called mad - usually trickily and euphemistically as in "you have a dysfunctional belief system" - by scientifically incompetent sadists or charlatans who happen to be professors in pseudo-sciences like psychotherapy or psychiatry; and
  • that ME is investigated biomedically, and
  • that proper biomedical research into ME gets much better funding than it has had, the last 30 years, at least.

Except for the last two points I consider each of these points a human right persons with ME and persons with other diseases have, or if they don't have them ought to have, while the last two points state a fair desire, namely that the disease ME/CFS is funded and researched much better than it is, and by real scientists, not by pseudoscientific psychiatrists and psychotherapists.

Apart from these points, I am quite willing to leave things to biomedical scientists, who anyway are the ones to find a biomedical explanation for the disease, and base some cure on it.

2. What needs to be done

Here are some points that need changing to get an effective "community" of patients with ME that can hope to achieve something - and no: I do not mean that all or most patients with ME should be "united" after some leader, banner and slogans; what I hope is in fact that a number of competent intelligent and well-educated persons with ME or advocates for them succeed in bringing about the following:

  • Change of the leaders there are: The forums are ill led, and so are the charities and patients' organizations I have seen, the latter with a few exceptions and some excuses (such as the lack of biomedical explanations from ME and the relative success of pseudoscientists, especially in getting power over governments' decisions as regards ME).
  • Creation of a forum where rational and scientific debate is possible: The forums about ME that exist are only effective as social forums and as places to find information about ME, but it is not possible to conduct any extensive rational or scientific debate on them (and indeed probably not on any social forum where any anonymous person on the internet can become a member of).
  • Coordinated action and writing by persons who are scientifically qualified, who can write and who can organize, instead of by the unqualified, the half-talented, and the fanatic activist types.
  • More good websites and blogs by persons with ME or advocates for persons with ME: See Some good info about ME and some good ME-sites for examples.

There is a lot I could add here, but in any case the first point is the main point: I am not going to follow any of the persons or organizations who have set themselves up leaders of patients or as acting for patients with ME, because I consider them unqualified for the task.

In any case, as I have said before, in the end it is up to biomedical scientists, who anyway are the ones to find a biomedical explanation for the disease, and base some cure on it. It is true that for this they need funding, and true that patients with ME have every right to help bring about more and better funding for research into ME.

The chances for success would be greater with better leaders and better organizations, though.

3. More on the DSM-5

The previous Nederlog was in part about the DSM-5. I mentioned ME agenda's site about it in this connection, and do so again, because her two sites have a wealth of information about and around ME and the DSM-5:

Here you'll find what is currently the clearest exposition of these imminent - possible - changes in internationally used diagnostic medical and psychiatric manuals to be, changes which I consider to be quite frightening if they are implemented, for reasons explained here: On the DSM-5TM.

P.S. Corrections must wait till later.

As to me and ME: The main things I might wish to say on these subjects have been said already, by Hazlitt and Lenin.

So far this year I have kept up with Recent Changes: Summaries of relevant changes on the site.

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 (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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