Just woke up, which is also the reason not to turn to you sooner.
I hope the reply gets in, but won't be amazed if it doesn't. In any
case, for those who've read parts of my site and some of my thoughts on
health-professionals, that tend to come served in satirical sauce:
(1) I have a long history of spoken and written controversy, mostly
about the decline of Dutch education, and so far have done most of this
alone (except as a so called "student leader" ca. 1980)
(2) If I do it alone, I can be very satirical and sarcastic, and mostly
am concerned with the truth.
(3) Now there are possibilities of organized groups of people with ME
and a good education, some thinking and planning should be done about
diplomacy and what may be called the politics of ME. With more people
and some coordination, we can use a many-pronged approach, and praise
what deserves praise, especially in journalists, for - I take it - they
do take a risk of e.g. an irate Simon Wessely calling their bosses.
As I may have said before on the forum: Lord Chesterfield was a clever
man and a diplomat, and he adviced his son many things about "how to
make friends and influence people", and one of his key sayings here is
"If you want to be pleased, then please". Dr. Johnson, his contemporary
called this "the morality of a whore and a dancing master", if my brain
is not too tired, for which diagnosis a lot can be said, but what we -
people with ME - need, are journalists willing to listen to us and
willing to take a risk to speak mostly for the patients rather than for
And this may take some flattery, some non-saying of bitter things,
perfectly justified as they often are, and also some awareness that
journalists, especially as regards ME, lack lots of knowledge people
with ME and health-professionals often have, and do run a risk of
displeasing pretty powerful health-professionals.
This does not mean one desists from satire and personal attacks, but in
its own place, to back up the nice requests and praise.
Anyway... none of this is in criticism of anyone. I only try to briefly
explain how we - people with ME - may go about it if succeed in getting
organized, and find people among us of various capacities, to get our
points of view across in various tones of voice.
And one of our strong points here is that (1) the NICE-approach, to
call it that for the moment, is based on pseudo-science. "The public"
and the vast majority of journalists are not up to making this
judgment, but (2) it is something almost all real scientists - i.e.
those who are not psychiatrists or psychologist, and don't have a
medical degree they may risk by opposing a professor of psychiatry -
will mostly agree psychiatry and psychology aren't much of real
sciences, and (3) if they look at the evidence will agree something
fishy is going on as regards psychiatry and ME, while (4) the general
public does not seem to be very fond of psychiatrists and psychiatry,
and rightly so (also given the nonsense it spouted about many subjects
between 1900 and 2000).
But I am pretty certain you mostly agree, and will later today get to
you privately, if this works by way of the forum's still wacky software.
P.S. The site is here: www.maartensz.org. Note that it is 150 MB text,
and part of it - mostly in Dutch though - is strong satire. It is
fairly well read, in that I have since several years over 300 different
daily visitors, between 2000 and 3000 daily hits, and over 100.000
yearly visits. (But this is mostly not because of ME, but because of
philosophy or programming. Anyway, in any 24 hours, my texts are read
about 72 hours, which apparently miraculous fact comes about through
having at least 300 daily visitors.)
P.P.S. One of the notions I have been playing with - having written a
Philosophical Dictionary - is a ME Dictionary. I think this might make
a very useful sort of thing, especially if put together mostly from
contributions from members of the forum, but edited. This helps also to
summarize lots of information, and refer people to "what I mean by ....
is under this link" etc.