June 2, 2010


ME + me:   Forums news...  


This is the fourth Nederlog today, which did not happen in a long time - I mean four on one day.

My experiences and arrival and leaving of the Phoenix Rising Forums (PR-F) have been documented in Nederlog of the previous month, and need some follow-up, for there is more news about the development of Norms, Values ("Respectful", yea I kid you not: literally not!) and Mores of PR-F, and there also is excellent new for all my readers who have ME and are intelligent and of good will:

There is a new me/cfs forum and it is good

Indeed, I know because I am a member of it and have posted on it - and so are very many other (former) members of PR-F, for one computer savvy person on PR-F who had had enough of it for smilar reasons as I had (though not connected with me, so far as I know), has set up a new forum, indeed with such free opensource software as I had proposed at one point for PR-F, and it works and looks a lot better than PR-F.

And then I haven't mentioned the members at the new forum yet: Very fine persons I have come to like and appreciate a lot and am very glad to have established some regular form of contact with outside ME, at a place that also can be used - eventually or as is - for more than just exchanging ideas and information.

It is also by way of this new forum that I learned of much more I very much dislike about the moderators and trolls at PR-F, for indeed it seems that in fact I have been very much less pestered than quite a few others, and indeed I have my own sites and my own styles to protect and defend me.

However... just now I am not providing a link and not providing much news either, because the new forum is still in the process of construction: it works fine already, but a few things have to be settled and worked out that come with such setting up of a public internet-place, and since I have not taken part in setting this up at all, and only today first posted, I merely gave the Good News here:

There is a new me/cfs forum and it is good

For this is indeed VERY good news, not only for those who liked the old PR-F before it got sick, but for the cause of ME, for there are some very able persons now assembled at the new forums, and they have yet again acquired some (tentative) insights about ME/CFS and the play and tricks and trolls  around and about it.

And no doubt there will be more forums news later on this place...

P.S. As usual - upon having read it through fastly - one more remark:

There will be more about those

"(tentative) insights about ME/CFS and the play and tricks and trolls around and about it",

for I am not the only one who has drawn a number of tentative conclusions, i.a. to the effect that the so called "moderation" on the PR-F in fact is censorship, and probably was intended as censorship by Cort, Martlet, Kurt and Jody, from the very beginning, namely as censorship for and in aid of a particular point of view how patients with ME/CFS should behave and write in public: As the CAA directors would like to seem them do, with proper respectful deference also to all such medical authorities, practices, theories and terminology it supports.

This conclusion seems to me to be far more probable than not, even if I only reckon with my own treatment on PR-F by its moderators and owners, for I could from the very beginning only explain this  plausibly as some underhand attempts to get rid of me, given the content, mode and striking lack of real decency, politeness or indeed cause for such carefully studied offensive rudenesses as I received, and aside from the fact that indeed I do have a large site of my own, and I do write in particular, strong, satirical and other styles - but then one would guess that such a one as I am gets some help or at least some decent explanations if he politely asks for them from people similarly afflicted as he is, except that they lack his sites, styles, degrees, mind, erudition, background, publications and intellectual and ethical outlook. Instead, I got the utmost bilge on the needs for spirituality, relativity and respect, either written by complete idiots with serious mental issues or else by crafty experts or advanced trainees in the art of underhand verbal offense and manipulation.

But more on this subject later.

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.


(*) A bit overly much in that the last two letters in "XMRV" also stand for "retrovirus", but OK: Now we know but such is usage, so far.

(**) This is difficult to quantify, for my history with ME extends over 32 years and comprises very many incompetent medical doctors, civil servants, university bureaucrats and what not, and various - very many, almost all completely unanswered - requests and pleas for help with many institutions.

In some cases, such ill treatment, refusals to help, lies, denigrations, defamations and discriminations I received had only to do with my having ME (and not another disease or other reason); in some cases it had only to do with me being me in Amsterdam (mostly for political reasons in Amsterdam and with the UvA, and sometimes for personal reasons because I do not take personal shit lying down and am far more intelligent than the idiots who think they can abuse me without risk); in most cases - notably all the Dutch Ombudsmen, both national and of Amsterdam, the Amsterdam medical organization GGD, the Stichting 40-45, everybody I had to deal with as mayors, aldermen or council-members in Amsterdam - it was both, in various proportions.

And one point to keep in mind is that my own position and experiences and personal history with ME in Amsterdam is quite unique and must be quite different from whatever horrors other Dutchmen with ME and without help had to live through, albeit in their case medical and bureaucratical incompetence and indifference and malice probably played large roles as well.

Maarten Maartensz

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