Nederlog

 

 March 25, 2011

 

me+ME: Phoenix Rising resurrected



I could not resist the title, and as it is not long after midday here in Holland, and some might be missing it or having trouble, here is a partial repeat of an item of yesterday, with some added remarks:

Phoenix Rising resurrected

The forum about ME/CFS on Phoenix Rising, that figured a lot in the Nederlogs for last year, at least during its first half year, when I wrote quite a lot for it, and then removed myself from it, but that I still follow, has another web address as of today. The new one is this

Yesterday there was a dot at the end in my text, which doesn't work, but the present one does, and I'll say something more at the end of this note, after partially repeating part of what I wrote yesterday, by way of introduction:

I could say a lot about PR-F, as I tend to abbreviate the Phoenix Rising Forums, which I will leave presently unsaid, except for noting three things in passing:

  1. There are at present - today - 4469 members, of which 832 are active. When I left it in May last year, there were around 2000 members, and about as many active members as now (between 600 and 900, if I recall correctly), many of whom have between June 2010 and September 2010 moved to the other MECFS-forum, from which I have been removed in July, for reasons I commented on yesterday.

    The brief summary of the statistics just provided is that PR-F doesn't grow as fast as last year, and does not have more active members than last year, but it is currently the largest forum for persons with ME In The World (I think - and I may be mistaken, since I avoid Facebook sites if I can help it).
     

  2. The owner Cort Johnson has succeeded in making it a non-profit charitable organization, that he names and describes as follows:

    Phoenix Rising -A non-profit 501(c)(3) charitable organization dedicated to improving the lives of people with chronic fatigue syndrome (ME/CFS) and other neuroendocrineimmune disorders

    The last part of this may turn out mistaken, but does conform to the present WHO
    classification of the disease ME.
     

  3. As the new address listed above shows, the PR-forums now are called "me/forums",
    which seems to me a correct choice of words, even if the currently most used name
    in the US is "CFS". But many patients, including me, consider this a misnomer, that very well may have been designed to pooh-pooh the disease, and so I agree with the namechange, even if one must keep referring, willy nilly, to "CFS".

    Also, one other change I noticed in the PR-forums is that there are now at least 3 more administrators than there were not so long ago.

Anything more on PR-F?

Well, yes one more remark: I think I have verified to my own satisfaction that advocacy, activism, and extended rational debate are not very well possible on PR-F, for which one good reason is that all manner of folks get ME/CFS, and write on PR-F, almost always anonymously, and without any website through which they could be better known, and usually without much knowledge of science, medicine, psychology, psychiatry etc., for which see my

But it is a good place for persons with ME to find folks similarly afflicted; to socialize with likeminded persons; and to find lots of information about ME/CFS.

As to the new site, linked here again: http://phoenixrising.me/forums/content.php - so that you may copy/paste it into your browser, some brief remarks, that probably are correct but also based on first impressions:

  • The address works and links to the new site, that looks like the old, but a bit better, and straightened out some:

  • All of Phoenix Rising now comes under the same banner, in the sampe php-package, and a uniform format and naming schema.

  • It mostly looks as before, but a bit smoother, more uniform, without an irritating bug in the top menu that was there for months (at least in the Firefoxes I used that time), and as the phrase is "more professional".

  • Everything I checked worked, as it seems it should, except that perhaps some of the data on users may need renewing.

  • I still don't like the logo, but as is, the site looks well organized, in principle, and has a fairly up to date look.

So I suppose this is mostly good news for persons with ME/CFS: The currently most popular ME-forum did get a bit better, in website terms, at least.


P.S. Corrections have to be made later.


As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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)

        home - index - top - mail