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:
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
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
The owner Cort Johnson has succeeded in making it a
non-profit charitable organization, that he names and describes as
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
The last part of this may turn out mistaken, but does conform to the
classification of the disease ME.
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:
- 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
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.