Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal

The only reason I don't want my illness viewed as psychological is because I desperately want to get better. If the last 30 years of (wasted) research funding on psych research is anything to go by then if they have proved anything it is that ME/CFS is not what they think it is & nor is it treatable by psych means.

Over the years I would have had a lot more family support if I had claimed I was depressed. I would have been treated more favourably by my employer and more sympathetically by the public, because the stigma of ME is much, much worse than the stigma of mental health.

However, I want to get well. To do that I have no choice but to swim against the tide, be stubborn and refuse to pretend I have a mental health condition. Luckily, since I found you lot, at least I'm in good company, but it would have made life a lot easier to just pretend I was depressed.

 

The adverb 'merely' seems rather an accurate reflection of how the medical system treats patients, on the whole. (Of course we know from certain literature that patients do not hold negative views toward psychiatry; I think it is safe to say that patients and patient groups have not generally contributed to stigmatization of mental illness, although some individuals certainly hold ignorant opinions.)

If this trivialization is due to physicians considering the illness 'psychological' or 'biopsychosocial', clearly the most fundamental blame rests with those who have been responsible for crafting the mainstream medical opinion seeking to frame it as such since the '80s, while expressly discouraging it being seen as a 'serious' condition.

Even if you assume that ME/CFS is a condition caused and perpetuated by maladaptive thoughts, or whatever psychological explanation you prefer, it is clearly a very serious condition simply down to the severity of impairment, as well as the poor treatment outcomes seen in PACE. It seems to me that Wessely et al have trivialized mental illnesses as a whole by working tirelessly to make sure CFS is not seen as a serious condition despite resulting in misery plainly on par with or greater than common chronic psychiatric illnesses.

Playing the victim of a desired outcome of one's own 4-decade strategy. Surely a strange place to find oneself in one's seventh decade.

 

Another day, another rabbit hole: https://www.latimes.com/archives/la-xpm-1990-10-07-tm-3264-story.html

 

It is strange thinking that apparently requires evidence to refute the suggestion that it is a psychiatric disease, when there was never any evidence that it was a psychiatric disease. Jenkins made the point in 1990 that hysteria required a positive diagnosis. Strange that was not considered a general prerequisite.

 

Another quote, this time from Komaroff:

 

And then this, from an article in which both Komaroff and SW are interviewed on this very topic:

 

Two of those things are not like the other two. I think he's very clever with his wording, certainly.

 

We see amazing new quotes with everything produced. That Komaroff, Wessly interview contains this

Stephen Holgate. For years the medical profession did not acknowledge chronic fatigue syndrome (CFS) as a ‘real’ condition. The situation became confused when the term myalgic encephalopathy (ME) was introduced and linked to CFS, with many preferring ME because it implied (rightly or wrongly) a concept of mechanisms.

That would suggest that in 2011 Holgate had no idea about the history of the condition. Was he unaware of the previous use of ME, before someone suggested it be changed to myalgic encephalopathy.

 

Yes. My perception is that SW has helped to create and perpetuate a culture in which people with ME suffer from far more prejudice and stigmatisation than people with psychiatric illnesses.

For example, I can’t imagine any psychiatrist (or anybody else) being able to state on the BBC that “nobody really liked” people with schizophrenia or any other psychiatric condition, without being strongly challenged. And yet his assertion on The Life Scientific that nobody liked people with ME/CFS was deemed to be perfectly acceptable by the BBC.

NB Knowing how SW likes to make gains from being misquoted, I am not suggesting that he said ”nobody likes people with ME/CFS”. He didn’t. The full quote is as follows:

Whatever his defence of his comment might be, it was notable that at no point during the interview was he critical of what he claimed to be the universal dislike of people with ME/CFS. He didn’t say that it was unethical for medical professionals to dislike people on the basis of their illness or disability. And he didn’t express any sympathy for ME/CFS patients who he (falsely) implied were treated by a medical profession which universally disliked them. (For full context, please read the full transcript of interview here: https://www.meassociation.org.uk/20...life-scientific-bbc-radio-4-13-february-2017/)

I would favour an independent public inquiry, not only into his actions but the whole treatment of ME/CFS for the past 30 years, followed by a truth and reconciliation commission. Were that ever to happen, and to be done properly, I feel it would be of benefit not only to people with ME but also to people with other illnesses who must also have suffered from the same poor standards in psychological and therapist-delivered research.

As I’ve said many times, speaking only for myself, I would try very hard to forgive SW and others if only they would have the honesty, humility and decency to acknowledge their mistakes and ask for forgiveness.

[Edited quote for accuracy]

 

I, personally, would count that as being of overwhelming benefit to PwME, I just wouldn't want to see anything that would be tilted in his favour. And as for "honesty, humility and decency", his recent tweet, and Sharpe's annual whinging about being "driven" from ME research, show that they have none of those things.

 

not to comment on the op or the comments on it, but for the record, i strongly oppose truth and reconciliation commissions for large-scale misopathy. i want to write extensively about why but cannot atm.

a little on it is near the end in my most recent blog post.

last 2 posts never went out to my subscribers due to a feedburner bug, which i hope they are working on.

last post, i worked on for maybe 16 years. one before covers historical stuff sometimes discussed on this forum.

 

​

He explained in the e-mail that it meant there was no right answer to my question. I never even bothered replying, he clearly isn't interested in having an honest debate with those who hold opposing views to his.

 

I'm very impressed with the patience and politeness of those asking sensible questions of SW over on Twitter.

For example [edits of original (corrections to typos) in square brackets. Q=Questioner, and may be a different person each time]:

I came away from reading these threads last night with the feeling that he is trying to convey that most people recover, a small minority don't, but continue to benefit from his therapies if they continue to engage with them. Also that he and his colleagues are trying their best, but are hampered by media myths about the illness. But he cannot say that explicitly, because it's not true.

 

Unfortunately we know what his "predictors of poor prognosis" are, or at any rate, were.

 

Ahh, how sweet. A mate of Simon's is trying to defend him against us now, and getting it wrong while he does so.

Code:

https://twitter.com/ProfRobHoward/status/1234155202690912259

https://twitter.com/user/status/1234155202690912259

 

I'm afraid I couldn't leave this one alone...

https://twitter.com/user/status/1234585081303502849

 

So disingenuous, knows perfectly well that the protocol for CBT for ME/CFS is significantly different than for RA/MS. No one tells an MS patient that there is nothing biologically/organically wrong with them other than deconditioning. CBT for ME is often simply gaslighting (albeit unintentional)m CBT for MS is not. If the therapist is in a different reality to you & tries to get you to drop your own & enter theirs, then if you really are delusional that's healthy.... if you're not delusional & *they* are... then wow that's NOT healthy.
They wont use the word delusional because its offensive & use 'unhelpful belief' instead.... but in effect a person who is terrified because they're convinced that a house spider will kill them... is delusional.