April 13, 2011


me+ME: ME and the media; me, ME and philosophy


The fairest thing of all is to be just;
The best to live without disease; most sweet
Power to win each day the heart's desire.
-- Sophocles

I couldn't resist the title - six occurences of the "me" sound if spoken. Anyway - here are today's topics in Nederlog:


1. ME: Amy Dockser Marcus and Llewellyn King on ME/CFS
2. Thinking about ME (and me)
3. me and philosophy

1. ME: Amy Dockser Marcus and Llewellyn King on ME/CFS

I have repeatedly mentioned Amy Dockser Marcus in Nederlog and also mentioned Llewellyn King. Both are journalists located in the US (Mr King surely is English, at least originally): The first writes for the Wall Street Journal; the latter has the TV show The Washington Chronicle; both wrote before quite sensible about ME/CFS; and both did it again recently, even together.

First Ms Amy Dockser Marcus latest article in the Wall Street Journal about ME/CFS, in which she reports on the State of Knowledge Conference that was on April 7 and 8:

It is a good and balanced article, though I am aware not all patients with ME will think so, as e.g. witnessed by this part of the above article about dr. John Coffin:

Emotions about XMRV have run so high for the past 18 months that after Coffin finished his talk, he asked for extra time to make a personal statement. He spoke mainly to patients, some of whom have called into question the motives of the scientists studying XMRV. Coffin said that scientists went into the studies eager to help and weren’t directed by their employers on whether or not to find XMRV. And they don’t have a commercial interest in the outcome. “The statements are not only inaccurate, they are painful to read,” he said.

The background is that Coffin changed his position on XMRV, which he now thinks is most likely a lab contaminant, and that a group of patients, who are, it seems, mostly posters on the MECFS forum I was kicked out of after protesting against quasi-Nietzschean pro-Wessely rot the owners there either like or love to tolerate so much that they do not want me tearing into it, have taken it upon themselves to mail scientists who have opinions the patients don't like.

I quite believe dr. Coffin, and I personally never mailed research scientists busy working on ME or XMRV, indeed regardless of what I think about them or their views. My reasons not to do so are (1) I do not have their expertise, and cannot tell them anything they don't know themselves or can't find themselves on the internet, if and when inclined, and (2) my hope is on research scientists: They have to explain ME/CFS in biomedical terms, and the more time they spend on that, and the less on mail by people who can't tell them anything new, the better it is, while (3) I also find it quite impolite to flood somebody's mailbox with unsolicited mails - which I don't like myself at all, and indeed have taken steps to avoid, years ago: I simply flush all unsollicited mail of senders I don't know and who do not show - credibly! - in the title they know me from my site, or in the flesh. Also (4): The people to put pressure on are politicians much rather than scientists: You can mail politicians as much as you please, because their job is to win votes by working for the electorate (formally: See my sections on Machiavelli, Boétie and on political texts to get to grips with the real thing), and they ought to be there for the electorate. Not so for research scientists, good, bad or indifferent.

So I am sorry to read this, as I am very sorry - "Emotions about XMRV have run so high for the past 18 months", as Ms Amy Dockser Marcus wrote, without italics - to have read that dr. McClure got death threats. You find it here on Phoenix Rising - not the threats, but the report of it:

Ms Brewer has the function mentioned and wrote in that capacity among other things:

--Dr. McClure has resigned from the review panel due to threats to her life and home (the FBI and Interpol have been called in to investigate).
--A group of chronic fatigue syndndrome(CFS) activists have objected to many of the appointees to this committee solely because of their beliefs about what may cause CFS. This has impeded the NIH's ability to recruit qualified virologists to serve on this review committee, because of threats made against Dr. McClure.

This is a great pity. I have received credible death threats myself, from Amsterdam mafia drugsdealers protected by the Amsterdam police and the Amsterdam mayors and aldermen, for Amsterdam is the Columbia or Mexico of Europe, thanks to the dedicated efforts of Amsterdam's mayors, aldermen, district attorneys and municipal police to protect and tolerate the very rich mafia much rather than poor and ill citizens, so I know this pretty awful. (*)

And while Dr. McClure is not on my list of favourite persons or admirable scientists, mostly because I think I have proved, indeed as well as these things can be done, that the editorial she wrote together with prof. Wessely is a shoddy piece of propaganda rather than real science

I am much against threatening peoples' life, health or property, including the lives of McClure or Wessely. (I don't mind satirizing them, but that's morally, legally, intellectually and humanly on a quite different level then resorting to or threatening them with physical violence.)

In exoneration, I can only plead that people with ME indeed have been mistreated in many ways and for a long time, so I can understand their anger, which I share. But patients with ME - or persons pretending to be - who threaten scientists by illegal means do not speak for me, and harm the cause of patients with ME, for the reason stated by Ms Brewer: When this happens, scientists are less likely to want to engage in researching ME. And besides, it is illegal, immoral, and is either quite stupid or not quite sane: At least try not to do to others as you would not be done to by them, even if they are despicable and dishonest - and no, I don't mean you have to be nice to them, or accept their pretenses, or their lies, or their delusions.

Back to more hopeful things. Mr. Llewellyn King made another program about and around ME, and has among his guests both Ms Amy Dockser Marcus and professor Leonard Jason. The video is here:

2. Thinking about ME (and me)

I mentioned yesterday that I had a program by which I can make hypertext helpfiles with text that resides in the executable, and that I may use for the purpose of bundling stuff about ME.

As I also mentioned, I like programming and indeed logic and mathematics, which I all read, do and think about much rather than I watch TV (a barbarian invention - well... its use is: I grant it's not quite the same as thumbscrews -that I don't owe since 1970: Now you know why I am so erudite ) and the program is a fruit of that interest.

Then again, after having fatigued myself with putting the stuff together, I realized it illustrates a difficulty I have, and probably quite a few others with ME as well:

I did read and learn quite a lot about ME/CFS the last year, that I did not know before, or that I did not know so well. The reason for this is again the same for me as for many others who have ME for a long time (I'm in my 33rd year of it): The XMRV-paper by Lombardi, Mikovits and others that was published in Science in 2009, sparked a lot of interest in ME, and also (re-)motivated a lot of patients with ME to make themselves heard somehow on the internet.

Now when I take up a lot of information that I consider worthwile, I - or my brain - tries to make sense of it all by organizing it somehow, indeed in a structure with levels, as manifested in books as chapters and sections, as displayed in buildings with apartments and building blocks and stones, and as shown in organisms as organs and cells.

It is this kind of organizing that the program I mentioned yesterday facilitates for texts - and I probably put it together and mentioned it because I am still trying to make sense - mentally digesting, as it were - of all the ME-related information I consumed the last year and a half.

Anyway... it still seems a sensible idea for me to try out, but it probably is a manifestation of my own attempts to make sense of great amounts of information.

3. me and philosophy

I am nearly 61 and should write out more of my philosophy, for if I am anything apart from a human being, then it is a philosopher - indeed the only one in Holland in my generation who - dared to - behaved like a real one, rather than like a bureaucratic careerist, and also one of the very few with any talent for it, which is why I was removed from the University of Amsterdam for asking questions in public.

The last link in the previous section is in fact to my

that I just saw dates from the previous millenium. If I feel up to it, I may update and rewrite it for this millenium, and I also do want to write more about and in philosophy here and on my site, also since it is clear to me that as an ME-patient I will not make much of a difference to how ME is treated or regarded, whereas as a philosopher I do believe I merit reading, if not while I am alive than when I am dead, for I think I may say that I have proven that I do have the abilities and the character for that like very few do. (**)

(*) The awfulness is indeed much like the awfulness of ME:

Nobody lifts a finger for you - you are on your own, for nearly all of the rest of the world cares not whether you live or die: They lead their own lives, and ordinary men are as a rule not born heroes nor individual characters, willing and able to think, act and judge for and from themselves, but conformists and moral hypocrites, simply from an adequate understanding of the ways of the world and their own cognitive, moral and individual limits.

(Yes, I know that saying or writing these bitter truths do not make me popular. Then again, if you have ME for quite a while, you don't need to be a philosopher or psychologist to know that the previous paragraph is a good explanation for the indifference - or disdain - you met with your average fellow human beings. Also, I am not condoning it, though I am saying that it is, in the end, in my opinion, a matter of native gifts, or their lack: "Stupidity and egoism are the roots of all vice", and at least the former is not within one's own choice.)

(**) I do not register this with great fondness, for the capacities to want to understand and speak the truth and not to follow the multitude into evil -

The greatness of man consists in saying what is true, and in acting according to Nature.
-- Heraclitus

- rarely is blessed with social rewards in one's life, and tends to come with considerable problems:

Préjugé, vanité, calcul, voilà ce qui gouverne le monde. Celui qui ne connait pour règle de sa conduite que raison, vérité, sentiment, n'a presque rien de commun avec la société. C'est en lui-même qu'il doit chercher et trouver presque tout son bonheur.
-- Chamfort.

P.S. Corrections, if any are necessary, have to be made later.
-- Apr 14, 2011: I did make some improvements today: I added point (4) and to note (*), and added links to my Philosophical Dictionary.

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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