ME + me : On a sad misunderstanding of me
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:
Indeed, as Mrs. Andrea Whittemore-Goade wrote today, as I have been mailed:
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!
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):
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:
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)
The position of persons with ME at present is a lot better, in principle, than it was before 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:
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.
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.
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