Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

Jonathan Edwards said:
Around the NICE committee table if the emphasis is on medical rather than medical the defenders of PACE, who may well be the majority, can easily smile and sit back and say 'they don't get it, do they, our approach is not mental, it is biopsychosocial and includes body and mind as one'. So CBT and GET get voted back in. If the emphasis is on lack of evidence and there is a denial that mental/medical has anything to do with it then the BPS people have to produce some answers.
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Can we get this printed out in big bold letters & made into a sticker for every non BPS committee member to stick on the top of their notes!

LOL am only half joking!
 
Jonathan Edwards said:
The problem is that it is so plausible - that all the fuss is being created because patients do not want the 'stigma of mental illness' - the general populous and the great majority of the medical profession will swallow that and forget anything else. So it is all emotionally driven harassment.
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To me there is a key point that gets forever overlooked and conflated. Most pwME do not primarily object to the mental health diagnosis because of the stigma, but for a much more valid reason - it is a misdiagnosis pure and simple, with all the risks and concerns that accompany any misdiagnosis, whatever the medical condition. Moreover that misdiagnosis is systemic, spawned as it is from deeply flawed evidence. To me it is not about mental versus physical, but about persistent misdiagnosis. pwME would be just as hacked off, and rightly so, if ME were forever misdiagnosed as an ingrowing toenail. It's just that the misdiagnosis in this case is one of having a mental health issue.
 
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Barry said:
To me there is a key point that gets forever overlooked and conflated. Most pwME do not primarily object to the mental health diagnosis because of the stigma, but for a much more valid reason - it is a misdiagnosis pure and simple, with all the risks and concerns that accompanies any misdiagnosis, whatever the medical condition. Moreover that misdiagnosis is systemic, spawned as it is from deeply flawed evidence. To me it is not about mental versus physical, but about persistent misdiagnosis. pwME would be just as hacked off, and rightly so, if ME were forever misdiagnosed as an ingrowing toenail. It's just that the misdiagnosis in this case is one of having a mental health issue.
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The proof of that are the ME sufferers who also have mental health issues and have no problem accepting that, talking about it openly with no sense of stigma at all, and no objection to their therapy or medication.
 
Barry said:
To me it is not about mental versus physical, but about persistent misdiagnosis
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In preparing material for a revision of the clinical care recommendations for a district health board, our draft has removed CBT and GET as treatments on the basis that there is no evidence that these help people with ME/CFS. However, we have recognised that simply not recommending CBT and GET is not enough to prevent medical professionals making unfounded judgements and pushing other un-evidenced treatments based on their own prejudices, or to prevent people with ME or their families doing the same.

Therefore we have noted theories that are not supported by good evidence as well.

Previously, a version of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), both aimed at increasing activity levels, have been recommended as treatments. However, it is now recognised that there is no evidence that these approaches are helpful for ME/CFS. Some people with ME/CFS report that these approaches have resulted in long term deterioration.
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Previously, treatment approaches have been based on theories that ME/CFS is a conversion disorder resulting from childhood or more recent emotional trauma, and/or is the result of deconditioning, fear of activity, poor sleep hygiene or other poor lifestyle choices, or certain personality types. There is no good evidence to support these theories. While management of stress, a good diet, good sleep, maintenance of a healthy weight, and activity that does not exacerbate symptoms are desirable, as they are for any chronic illness, these things have not been shown to be curative. It is helpful for the patient and their family and employer or school to understand this.
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Alternative treatments have not been shown to result in objective benefits and are often expensive.
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Currently there are no treatments for ME/CFS with an adequate evidence base. However, good management and treatment of co-morbidities can make a significant difference to quality of life.
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I think it's possible to address the faulty illness beliefs of the BPS proponents as well as getting rid of CBT and GET using an evidence based approach.
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Jonathan Edwards said:
Around the NICE committee table if the emphasis is on medical rather than mental the defenders of PACE, who may well be the majority, can easily smile and sit back and say 'they don't get it, do they, our approach is not mental, it is biopsychosocial and includes body and mind as one'.
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[my bold]

If all that that implied were supported by good scientific evidence, then that would be fine. But of course it's not, yet still they smile/smirk.
 
Barry said:
To me there is a key point that gets forever overlooked and conflated. Most pwME do not primarily object to the mental health diagnosis because of the stigma, but for a much more valid reason - it is a misdiagnosis pure and simple, with all the risks and concerns that accompanies any misdiagnosis, whatever the medical condition. Moreover that misdiagnosis is systemic, spawned as it is from deeply flawed evidence. To me it is not about mental versus physical, but about persistent misdiagnosis. pwME would be just as hacked off, and rightly so, if ME were forever misdiagnosed as an ingrowing toenail. It's just that the misdiagnosis in this case is one of having a mental health issue.
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Discrediting opposition by painting it as irrational is a classic political strategy. It is only used by people who know they cannot win on the strength of their arguments, but rather choose to shift the debate over trivialities.

That it is used at all is a travesty. It just shows that the "controversy" is entirely over politics and ideology, not science. It is also a very big tell that it is framed from their personal perspective, that it is an "attack" on their profession, when we actually don't care or think about them beyond what they are forcing on us.

Had it been podiatrists, chiropractors or ob/gyns who had made such extraordinary claims the response would have been the same: wrong on substance. This framing of being about the stigma of mental health is made entirely from their personal point-of-view and has no bearing on the actual substance.

There are plenty of other quacks making all sorts of different claims about how to treat this disease and many others. There is no shortage of people claiming they have an easy cure for all cancers and infectious diseases. We do not pay attention to those because they have not captured the policy-making process. Institutions are supposed to filter out quacks making extraordinary claims without any evidence, not let them run the show as they have here.

That the psychs make it all about them and tiny little world, their career and pet theory, says it all. They cannot seem to factor reality outside of their wants, especially not the actual needs of patients. This is a common feature of ideologues of all stripes. It's also the biggest red flag in the damn world that they're full of crap.
 
I agree it's important not so see this as medical or mental.

It also is not good tactics: Some of the people working in this field who support us or who remain open to hearing our case are those who are fighting the 'critical psychiatry' people who try to deny there is anything but the 'psychological' and who think everything is down to personality and experience and can be treated by psychotherapy.

If we are seen as against psychiatry and 'mental illness', we would alienate those people and indeed lose credibility. It is one of the ironies, I think, that we're actually on the side of psychiatry and against a handful of psychiatrists, led by the former President of their College, who are seeking to explain our illness in behavioural terms.
 
JohnTheJack said:
If we are seen as against psychiatry and 'mental illness', we would alienate those people and indeed lose credibility.
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I agree, but to me this isn't solely about credibility in the eyes of others. I think its possible that other forms of psychotherapy might actually help some ME patients, for example in dealing with a chronic debilitating illness that makes you lose friends, hobbies and everything else, or coming to grips with the opportunities missed, the fact that you're no longer the person you used to be or hoped to become etc. Would be great if ME patients had access to a psychotherapist who validates their illness and the psychological difficulties that come with it. A biomedical treatment is probably years away, so this kind of psychological support might be one of the few things the medical profession can do to help (a subgroup of) ME patients. So I don't want a fight against psychiatry or mental care, I want them to help us.
 
Michiel Tack said:
I agree, but to me this isn't solely about credibility in the eyes of others. I think its possible that other forms of psychotherapy might actually help some ME patients, for example in dealing with a chronic debilitating illness that makes you lose friends, hobbies and everything else, or coming to grips with the opportunities missed, the fact that you're no longer the person you used to be or hoped to become etc. Would be great if ME patients had access to a psychotherapist who validates their illness and the psychological difficulties that come with it. A biomedical treatment is probably years away, so this kind of psychological support might be one of the few things the medical profession can do to help (a subgroup of) ME patients. So I don't want a fight against psychiatry or mental care, I want them to help us.
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Yes, absolutely. I just meant in terms of treating the illness. I didn't mean to suggest that I was against psychotherapy in itself. And in fact that's another point those psychiatrists make.
 
Michiel Tack said:
Would be great if ME patients had access to a psychotherapist who validates their illness and the psychological difficulties that come with it.
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Most pubs have at least one barkeep that could do pretty much the same. Or clergy person.

Patients would have to make it to the saloon or church, though - then again, the same holds true with traveling to a talk therapist.
 
JohnTheJack said:
It is one of the ironies, I think, that we're actually on the side of psychiatry and against a handful of psychiatrists
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I will seriously put up a good fight to name this disease Catch-22 disease. It will probably fail, but damn is it the most appropriate one.

I'm all up for good psychiatrists, that's likely most of them. But definitely not for those that make extraordinary claims without any ordinary evidence and recklessly promote an ideology with complete disregard for the suffering it inflicts.

It's disappointing that good psychiatrists don't see it as enough of a problem to do something. It will enormously hurt the field's reputation, and rightfully so. Maybe that's the kick in the shin that it needs to finally learn lessons from repeating the same mistakes over and over again.
 
It strikes me that the last dozen or so posts since and including Jonathon's sum up a lot of sensible, coherent rebuttal to the BPS position. Perhaps someone should distill the major points into a S4ME position paper that is put somewhere prominent so the ideas don't get lost. It would be mostly a matter of copy and paste I think, provided the original authors agree.
 
Diane O'Leary said:
Yes, I mean "medically unexplained symptoms". Roughly speaking, 50% of outpatients' symptoms fall into that category (or at least this the figure you generally find in practice guidelines). The health system in the UK actually says 52%, so the majority of the time when people go to a doctor outside the hospital, the doctor concludes that the problem is MUS.
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Jonathan Edwards said:
I think it is important to get our facts right. Where does this come from @Diane O'Leary ?
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Jonathan Edwards said:
And what is this 52%? I think that sort of figure comes from the number of attendances at clinics not the number of cases. Whatever you include in MUS it is a very small proportion of the number of ill people.
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These posts along with the detailed posts by @Dx Revision Watch prompted me to do some digging into the research on which the varied claims about the prevalence of MUS are based. I have started a new thread about it so as not to derail this thread:
Is it true that more than half of medical consultations are for MUS? A look at the evidence.
 
TiredSam said:
The proof of that are the ME sufferers who also have mental health issues and have no problem accepting that, talking about it openly with no sense of stigma at all, and no objection to their therapy or medication.
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Im quite happy to say CBT and SSRIs have helped me immensely to cope with my OCD. I’m also happy to say it’s done bugger all for my ME/CFS.
 
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