Nice to have journalists on board in this forum. You wrote:
Originally 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.