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

DigitalDrifter said:
The reason ME patients don't want their illness viewed as psychological is that their symptoms will be viewed as inconsequential (I.E exercise can't harm you).
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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.
 
The reason I don’t want my illness treated as psychological is because I had a depression diagnosis for about 10 years before I was finally diagnosed with ME. I took fluoxetine and had counselling for all that time, pushed myself to work 85% of full time and also at times tried to do exercise. Despite all that I still got worsening symptoms sufficient to actually realise I had something else wrong with me and eventually the ME diagnosis.
 
Another day, another rabbit hole: https://www.latimes.com/archives/la-xpm-1990-10-07-tm-3264-story.html

CFS “is a controversial subject,” Holmes says. “There is a sizeable percentage of physicians who believe it is nothing more than a psychiatric disease. And the problem is that there really isn’t sufficient evidence to totally refute that yet. There is plenty of room for argument.”

Dr. Thomas C. Merigan, professor of medicine and an infectious-diseases specialist at Stanford University, believes that too little research is being conducted into the psychological aspects of CFS.

Merigan himself is not involved in any CFS studies; thus “all I can do is speculate,” he says.
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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.
 
And then this, from an article in which both Komaroff and SW are interviewed on this very topic:
Q. Does CFS have a psychiatric and/or psychological component? Why is there such resistance from patient groups against this idea?
SW: ... do you consider illnesses such as schizophrenia, major depression, Alzheimer’s disease or autism to be psychiatric or psychological? If you do, then the answer might be yes.
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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.
 
Invisible Woman said:
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.
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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:
SW said:
And as I got a bit older I had a stroke of luck that I went to Queens Square, The National Hospital for Neurology and that was in this fantastic hospital, surrounded by neurologists, so there were only three psychiatrists, and that’s when I really started to get interested in research, and that’s where I got interested in ‘chronic fatigue syndrome’

And because these patients were being seen there... I have to be honest, and say nobody really liked them.
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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/)

Andy said:
I personally wouldn't want to play any part in his rehabilitation, not unless there was an overwhelming benefit to PwME in doing so.
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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]
 
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Robert 1973 said:
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.
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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.
 
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All this stuff just shows (yet again) that Wessely is a master sophist and manipulator. That is his primary skill set. It sure ain't quality research or clinical care or policy advice, let alone genuine concern for the fate of his patients.

Merigan himself is not involved in any CFS studies; thus “all I can do is speculate,” he says.
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I would prefer if Merrigan just shut his fat ignorant mouth.
 
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]:

Q: Do you have any active role in research towards it or have you left the field entirely?
SW: I still see CFS patients. Have done for 30 years. Still enjoy it. Am sad when I read these tweets but am confident it doesn’t reflect experience of patients I and colleagues see.

Q: If you don’t mind me asking, what do you offer CFS patients? Do you see them because they have it or is it because of other illnesses?
SW: Because they have it. It’s pretty much my main clinical focus these days and has been for some time.

Q: Do your patients recover?
SW: Yes some do. It’s in our published papers.
SW: [to same question] You know of course that I can’t comment on individual histories. I certainly can tell you that I do see for support people who haven’t recovered including after trying evidence based treatments. [And] that’s also a valuable use of my time.

Q: So a proportion can recover from e.g. CBT & GET, but many others are made worse by it, or it just doesn't help them.
SW: It’s always a balance between harm [and] good. No treatment only does good. That’s impossible. But where we may differ is that I believe in the evidence that CBT [does] more good than harm.
Q: Yes if the good outweighs the harm then that's not necessarily a bad thing. I personally think that the kind of CBT which tells patients there's nothing physically wrong with them, when we don't actually know that for sure, is harmful.
SW: Am sorry but that just isn’t CBT otherwise how [would] CBT improve rehab in RA MS or cancer? What I tell people is you have been dealt a hand of cards - we can’t change that - but there are different ways of playing that hand.

Q: Have you published anything on those you’ve seen who haven’t recovered, and your thoughts on why this maybe and what the way forward might look like for them? Wld be interesting to get your view on this.
SW: We have published on non response. Yes. And predictors of poor prognosis also. It’s in the paper lists. And yes of course some don’t get better and I freely admit we don’t know why.

Q: 2 years ago I pushed myself to run 5k. Did it, relapsed for 6months. Still not right.
SW: Again I can’t comment on individuals. However I can say categorically that we would never ask anyone to attempt to exercise off their fatigue via a 5k run. It’s exercise but it’s neither graded nor therapy.
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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.
 
Ahh, how sweet. A mate of Simon's is trying to defend him against us now, and getting it wrong while he does so.
The usual folk piling on to attack Simon over ME/CFS, do you actually think anyone believes that illnesses either have to have a demonstrable physical basis or are “made up by patients”? Such an insulting and stigmatising way to view people suffering with mental health disorders.
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Code: 
https://twitter.com/ProfRobHoward/status/1234155202690912259
 
Andy said:
Ahh, how sweet. A mate of Simon's is trying to defend him against us now, and getting it wrong while he does so.
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I'm afraid I couldn't leave this one alone...



Me: So everything is psychological unless proven otherwise? That's really shaky ground you're standing on right there.

Him: Much is psychological. Not everything. In the absence of convincing physical abnormalities, how can you so confidently rule it out? All I am hearing is that you don’t like it, so you won’t have it!

Me: Why does it have to be one thing or the other? Isn't that a bit dualist? In the absence of physical abnormalities, why not consider that maybe we haven't found what the abnormality is, rather than assuming that it is something "psychological", whatever that is.
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SW: Am sorry but that just isn’t CBT otherwise how [would] CBT improve rehab in RA MS or cancer? What I tell people is you have been dealt a hand of cards - we can’t change that - but there are different ways of playing that hand.
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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.
 
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