July 19, 2010


ME + me : On a sad misunderstanding of me


It is sad to be often misunderstood, and indeed I felt compelled to write the following mail to several leaders in our communities of patients with ME, seeing that my texts from yesterday seem to have given rise to some sad misunderstandings.

1. On a sad misunderstanding of me
2. On the present position of persons with ME

1. On a sad misunderstanding of me
   (Text of an email.)

Dear Suzy, Patricia and Since,

There seem to be a few misunderstandings I would much like to clarify, since we are all on the same side, it would appear.

1. I received today by a mail of Suzy Chapman (MEAgenda), who is rather concerned that I may have used her personal avatar to make fun of Patricia.

Now this is and is not so, to start clarifying things: I do apologize having used what came to hand quickly to mask our dear Patricia's face from the public, and indeed much more fully than I had done in an earlier attempt, where I only replaced her jaw, which some might have felt to be not quite fair.

I therefore proceeded to take care to to mask all of Patricia's face from the public, while gently making my point visually in a slightly scary, and I also hope slightly humorous way, namely: that I am personally somewhat scared by plans to scaremonger among the public, with living deaths and other oxymorons, and with false or unproven statements about XMRV and ME thrown about by persons with ME as if they were true.

Suzy Chapman, however, has nothing to do with all that and I am deeply sorry that, while fatigued, I indeed did fail to find another face - e.g. from Hieronymus Bosch's paintings - to mask Patricia's face fully from the public, while fairly - I think - making my point figuratively nevertheless, albeit perhaps with somewhat too much levity, though - you should notice - without in any way revealing any personal details:

To get the public on the side of persons with ME, and to get funding for real scientific research into ME,  it is not necessary to do more than tell the facts about and around ME as they are, and especially if dr. Alter's research stands and has been published: Then the US goverment WILL have to take care, not because of ME but because of the health risks involved blood transfusions.

Indeed, as Mrs. Andrea Whittemore-Goade wrote today, as I have been mailed:

Please make sure you direct that energy in a positive way IE writing positive / informative letters to the appropriate individuals that can make a difference . Also allowing the people who have the time, energy and expertise to deal with this to do their job. I want to reassure you there are many many people speaking and researching on your behalf. I meet them all the time. The word is out. Their is deep concern and true focus for the first time in a long time by some who never knew what ME/CFS or neuroimmune diseases were. Please do not use what little energy you have on negative emotions.

This seems to me to be quite so for the reasons I sketched yesterday and before, even though she puts it in other terms than I would, I do quite agree with her.

2. I was also surprised today by a very puzzled Manuel, who had received the following message form Since's and Patricia's personal ME-forum:

I really cannot understand what can be wrong with a person who never said anything; who knows nothing, like Socrates; and who now seems to be scapegoated for what are taken to be mistakes of another, such as Suzy Chapman or myself!

Is it perhaps that Patricia wishes to take my gently making fun of her ideas out on poor Manuel? (He cannot possibly have broken any forum rules.)

Besides, one should give rational reasons, I honestly feel, but I also realize that these things may be, and very probably are, a matter of personal values and philosophy. In this connection:

3. It has been brought to my notice that Eric Johnson from I&I (not the person from Incline Village or Lake Tahoe, also thus named, and indeed "Johnson" is a very common name, as is "Eric"), might conceivably have taken exception to my prose of yesterday.

Being somewhat of a Nietzschean myself - for readers of German, such as undoubtedly my Nietzschean colleague is, the last link links to a very relevant bit of Nietzschean prose Von den Taranteln ("Of Tarantulas") preceded by - it may be said - a true Nietzschean lesson that I have long since appropriated myself, while having had to live through the decades with ME in my fatherland, shunned as less than a junk, and not fit for any help whatsoever (for such junks in Amsterdam have a proven Dutch legitimate reason to get much help, in Amsterdam, for many years, and totally unlike me, who merely has a diagnosis of doctors that I am ill since 1.1.1979, and the best possible university degrees in psychology):

   "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane, one not." (Jung Chang, Wild Swans, p. 454) -

So let me assure you that Nietzsche himself taught the world, next to the need for supermen, that... all truth is relative, and that all modern Nietzscheans, virtually to one person, will explain you what irony is, and how to Warhol, and that we all know how difficult it is, in these times especially, to find correct textual interpretations, especially in the light of what Nietzsche himself taught us, who might indeed also have been the first member of our community with XMRV as Eric, my Nietzschean colleague and superman, has so ably pointed out, in such fine English also.

4. In the end then, as our community has found again and again, all that is, is - is it not? - a relative matter of one's personal philosophy of life, as Nietzscheans well know, for which reason I may perhaps remind Administrator Since of this fragment of a mail I wrote him over a week ago, with my bolding and links added today, him starting this recitation:

Also I have to ask you not to copy and paste the messages by other members to your website, or anywhere else. The posts are property of their authors and you will need permission to repost them.

OK and fair enough in principle, but the details are arguable, certainly if the forum is open (and it is semi-open). Indeed, I considered putting in more letters instead of names, but it was (and is) quite hot here, which I don't handle well.

Also, I thought the reasons strong enough: I do not want to be spoken to as Lansbergen did or if it does - I am a free speech person - I want to know where lawyers and/or I can address it accountably, and I can do a little Dutch satirical writing. And I think Patricia's - and others, also on PR-F, and in the past as well - activism-plans plain silly at best.

And I thought at least the last needed some urgent saying, both for reasons of common interest of pwME and self-interest as pwME: I do not want ME-patients to plan illegal acts and not interfere with blood banks or with possibly XMRV-infected blood.

It is both immoral, risky for genuinely ill people involved, and very easily abused by media and CDC etc. 

O, and as to posts: There is such a thing as fair quotation and lots of licenses, creative commons etc. etc. But personally I agree it is best that posters own their posts, indeed are responsible for it, and further as above, with one basic proviso: If I think something reprehensible shit that needs contradiction, I shall use what I please. This applies for me in any case, so is nothing special for whatever is on ME-F.

Could I conceivably have been clearer and have shown more foresight? For a mere mortal, and no Nietzschean superman either, I think I did well enough, though I am well aware that, this is, of course, in the end, relative to the great difficulties of all and any correct textual interpretations, as we all know, things being quite relative indeed, as especially Nietzscheans and philosophers know so well, to what one personally knows and personally can do, and what is one's personal philosophy of life.

I hope to have clarified these sad misunderstandings which seem to have arisen, and await your personal replies, while thanking you for your time and attention,


drs. Maarten Maartensz (psychologist)

2. On the present position of persons with ME

The position of persons with ME at present is a lot better, in principle, than it was before October 2009.

The reasons reside in a few facts that I have written much more about on this site and in Nederlog, so I only list them

  • there is a newly discovered retrovirus in human beings, called XMRV, that may be dangerous for quite a few reasons, and that has been linked probabilistically with prostate cancer, ME/CFS, and quite a few other diseases
  • this was expounded in an article by scientists working at the Whittmore Peterson Institute in the prestigious journal Science in October 2009.

This is good news for people with ME, and it is bad news for people collecting blood for blood transfusions, because for the former it gives both a chance for some real scientific light on a possible cause of ME, while for the latter it means that if the relation between XMRV and various dangerous diseases stands, there is serious danger many might eventually get some dangerous disease after having had some blood transfusion e.g. for a minor operation or accident.

Meanwhile, what the real facts are is not yet established, and indeed

These falsified or methodologically and intellectually very flawed "studies" are - in brief - what anyone with some knowledge of ME would expect from these folks, and anyone with some knowledge should have taken this as fairly to very ludicrous attempts to stem the tide of real science.

Not so, alas: Spurred on by a few recent arrivals on ME-forums, a veritable hysterical mood was soon created on ME-forums, that were flamed even higher with the news that:

  • a very prominent medical professor and researcher, dr. Alter, together with others, and working for the NIH and/or FDA, that are both important US governmental health-institutions, has established that (i) the Science study is quite correct and so (ii) the CDC, Reeves, Wessely and other "studies" are incorrect - but
  • before Alters paper, that was already accepted for publication, it is claimed, got published, it was "put on hold", it seems by some internal US governmental politicking
  • and dr. Alter's paper is still "on hold", but has been promised to appear soon.

Now if it appears essentially unaltered, that is, with the findings in it that were earlier reported and are summarized above, the position of persons with ME improves a lot, in scientific and legal principle, even if in fact XMRV does not cause ME (which nobody knows for sure, just as nobody knows for sure it does not), for this will very probably trigger a great amount of research and indeed the required funding, to do real bio-medical research on matters at least related to ME, that may uncover a lot that sofar lies hidden in the dark.

That's why I am fairly optimistic - after 32 years of living with ME or at least the syndrome the Canada Criterions detail, and also why I am willing to wait, for the moment, and see what dr. Alter's paper will bring.

P.S.  The second part is a slightly revised version of yesterday's first part. And to spell this out too:

If dr. Alter's paper remains as was claimed before it was put on hold, then there will be great changes in the position of many governments with regards to ME, and indeed mostly regardless of whether a causal explanation of ME will stand up under further research, and also without any patient with ME having to do much, simply because XMRV then is something that needs investigation and prevention, in the interest of the general population, all of whom are rather likely to be in some need of blood transfusion in their lives; and if dr. Alter's paper turns out to have been radically altered in conclusions, then there is indeed reason to find out why, and try to put considerable pressure on the media to do so, in case this doesn't get properly clarified.

What is not wise, and is not in my interests as I see them, nor in the interests of real patients with ME, is for patients with ME to start scaremongering the public; to endanger others; or to spread false or uncertain information about XMRV or ME as if it were true:

That is playing into the hands of those folks at CDC, KCL, Radboud and other places, who have been for decades mostly succesful blocking real scientific research into persons with ME by claiming persons with ME are mad.

For the moment just wait and be patient, and see what happens to the Alter study.

If you can't or won't, in my book it is because either you are irrational or because you have a personal interest to be irrational.

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.

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

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

Maarten Maartensz

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