Nice to have journalists on board in this forum. You wrote:
Posted by Kelly
As a psychologist and
philosopher I respectfully disagree, or at least find this a very easy
bit of a very common trope:
I am ill now for over 32 years, and have been polite and reasonable and
friendly and kind to all manner of people who were none of these things
to me, supposing myself to be rational, reasonable AND scientifically
educated, and to have ME. And generally I simply was not answered: not
by medical people (with some exceptions), not by bureaucratic people,
and not by journalists - I might just as well not have existed at all.
(The general notion with journalists seems to have been and still to be
that one just must be mad if one complains about the difficulties of
having a disease that is not "officially recognized". After all, if it
were half as serious as I claim it is, doctors and psychologists would
have done something, don't you see?!)
Now, the evil or stupid things others do does not justify that one be
evil or stupid oneself, but there really is a serious problem:
How to deal with unreasonable or irrational people, including
journalists, bureaucrats and medical doctors?
And if, as you say, it is "human nature" to be unreasonable or to draw
false conclusions from evidence, why should I or other people play by
the rules as if that were the reasonable and fair thing to do, simply
to avoid being labelled adversely?
Anyway: I HAVE been polite and factual and I HAVE used citations when
trying to prove a point, and while I DO agree those are nice and proper
tactics, at least when speaking to nominally rational people like
mathematicians and physicists and people with an IQ over 130, which is
what most journalists, most bureaucrats and indeed most doctors do NOT
have, I was not answered and was studiously disregarded by journalists,
bureaucrats, and medical and psychological folks, while the impolite
non-factual and unfounded accusations of people with ME by journalists
and psychiatrists - "Yuppi-flue! All in the head! Malingerers! Frauds!"
- have been in the papers now for over 30 years that I know of (indeed
with a few rare and great exceptions like Hillary Johnson).
So... while your recommendations are nice (and a bit run of the mill),
I am afraid most people who are polite, friendly and kind, and quote
authorities, won't be heard either, if they write about ME. (Hillary
Johnson also fails horribly by your strictures.)
Well... by now it seems to me much more important to first get a public
hearing and be publicly recognized, politely or impolitely, rationally
or irrationally, and then play it from there, instead of being polite
and crawling Mr Niceguy to all manner of journalists who don't have a
hundredth part of my knowledge of science, and 40 or more IQ-points
less, but who nevertheless determine what manner of hearing a patient
with ME will (not) get depending on the niceness and humility and
politeness of one's prose. I simply ran for thirty years into a
conspiracy of silence, of incompetencen and of indifference, all backed
up by continuing insistence that *I* ought to be polite, normal, not
complain too loudly, and anyway better shut up or visit a psychiatrist,
if I wanted help or be heard.
Fortunately, this forum may - eventually - make a difference,
hopefully, simply because there are quite a few on it who are like me:
highly educated, ill for a very long time without help, smart and angry
- and I suggest, as a psychologist also, that their anger is quite
justified (though indeed it really is unwise to indulge it uncritically
and without restraint).
In any case, and for what it is worth (since this depends on my
personal idiosyncracies): I HAVE shot myself in the foot, and quite
seriously, by being polite, nice and friendly to quite dishonest,
dissembling, unreasonable and irrational bureaucratic and journalistic
folks, that indeed all much insisted that I ought to be polite, and
nice, and friendly, and anyway - in fact - just as well or better could
drop dead, although they rarely were so angry as to say the last thing.
In brief: I would not have written this note if - say - 10 percent of
your journalistic colleagues, all over the world, would have had
something like 10 percent of the courage and brains of Hillary Johnson.
Unfortunately, that seems not to be the case, or if it is the case your
journalistic colleagues are remarkably good in hiding their talents and
courage, and behaving as if they are functionally braindead and
heartless. (There are exceptions, to be sure. Bu the great majority of
men and women is neither especially smart nor especially courageous,
and that applies to journalists too.)
Finally, as I have written on this forum and my site: It is my
*considered* opinion that at least part of the reason for the illegal
discrimination of literally MILLIONS of people with ME for over 30
years now are the utterly unscientific and immoral doings of messrs.
Wessely, Sharpe, White etc. that I, as a psychologist and philosopher
of science, can only rationally explain by assuming that they are
scientific frauds and seem to be motivated - also in view of the WHO's
rulings about ME, that are completely at variance with their public
stances - by sadism (the desire to hurt, harm or denigrate others).
Also, I insist that, for all its lack of niceness, this is *AT LEAST as
good and SCIENTIFIC a hypothesis* about THEIR failings and motives as
is their hypothesis about MY failings and motives (to wit: I am a
malingerer or fraud, if not outright insane, all on the strength of the
fact of compaining about muscle-aches and exhaustion).
Alas, if what you wrote applies, it seems I am not even allowed to say
what I have just said. I find this quite ridiculous, and what you seem
to miss is precisely this dimension:
That ME got its branding of madness, malingering and fraudulence by -
what I think and insist I have both the right and the duty of saying -
are the mad and fraudulent doings, sayings and propaganda of a handful
of lying psychiatrists and psychotherapists, who do not even have the
proper scientific education to properly deal with the topic of ME.
AND - of course - also in large part because so many journalists the
past 30 years have been so happy to spread the views of false and lying
"authorities" about ME, instead of doing some proper investigative
journalism into ME and the institutions and persons making money and
reputations from it, while destroying the reputations and money-making
capaities of those who suffer from the disease, as indeed Hillary
Johnson did but - to my knowledge, and I love to be corrected - very
few of her journalistic colleagues also did.
P.S. To avoid landing people in difficulties or being misunderstood: I
emphatically do NOT recommend that people with ME are impolite with the
doctors they meet privately. (Lord Chesterfield's advice to his son
applies here: "If you want to be pleased, please!")
I DO recommend that people who DO have the necessary qualifications
speak out against the lies and misrepresentations that are still the
norm in the media about ME, even if the average journalist may look
upon such people as not fit to be listened to or reported: I want to
speak the TRUTH and not such lies or polite gobblydegook or doubletalk
as may please a journalist.
Also Kelly, since you are a journalist, and I like to indulge in
positive recommendations as well: I think it may be a good idea to make
a good interview with a person like DrYes - who has ME and knows
science - on what it is like to have ME, and on what may explain it,
and get that published in a quality-paper.