NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

TiredSam said:
the patient has to accept the therapist as a parent figure for there to be any progress.
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I dont want to take the thread off topic, but just to say that it would be interesting to know the theraputic orientation of said therapist... ie psychoanalytical (freudian), psychodynamic or humanistic? Since in my (albeit limited) experience, Humanistic therapists consider themselves equal to the patient & often actively reject the 'parental'/authority role.
Having had some humanistic therapy myself some yrs back (for something other than ME) working with someone who was actively against being put in a position of power/authority, & I made massive 'progress', indeed it changed my life... for the better . So i'd say the idea that it's necessary for progress to be made is not borne out.

Any therapist who likes to be in the authority figure/power position is one i'd run a mile from personally, & they are certainly not all like that, it seems to be a psyhcoanalytical/psychodynamic attitude afaics
 
Sly Saint said:
It is also misleading to refer to CBT & GET as ‘treatments’ of choice’. They cannot properly be described as treatments, since, as NICE admits, they do not address the core pathology of ME.
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I would like to think we can move on from this approach. The argument here is not valid. Treatments very often do not address core pathology but work very well - like anti-TNF for rheumatoid arthritis. This time around we need to get the right arguments in focus. The right argument is that there is no evidence that treatments work and probably quite good evidence that they do not and also make things worse.
 
TiredSam said:
The common theme in all the above to me is the complete absence of the voice of the subject.
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I think this is very relevant. The Chalder and Wessely 1989 paper talks of requiring the patient to accept the validity of the treatment - this being at a stage when the treatment has not even been tested for efficacy! It talks of educating patients. So that should mean telling the patients that whether or not they have the treatment the outcome is likely to be the same in two and a half years time.
 
Jonathan Edwards said:
I would like to think we can move on from this approach. The argument here is not valid. Treatments very often do not address core pathology but work very well - like anti-TNF for rheumatoid arthritis. This time around we need to get the right arguments in focus. The right argument is that there is no evidence that treatments work and probably quite good evidence that they do not and also make things worse.
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I think I fundamentally disagree with this. There seems a world of difference between saying that this might work, but doesn't and saying this doesn't work and there is no reason why it should.
 
chrisb said:
I think I fundamentally disagree with this. There seems a world of difference between saying that this might work, but doesn't and saying this doesn't work and there is no reason why it should.
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But saying there is no reason why it should is an opinion. It may be a very reasonable opinion but it is not based on any hard evidence that there is a process that could not benefit. As I have mentioned before, exercise is good for RA, despite making symptoms worse in the short term and having nothing to do with the core pathology. The problem is that if weak arguments are given a high profile it is very easy for nobody to take any notice. Gibson implies that we know there is some core pathology - but we don't. Combating bad science with bad science is not going to get us anywhere.
 
Jonathan Edwards said:
I think this is very relevant. The Chalder and Wessely 1989 paper talks of requiring the patient to accept the validity of the treatment - this being at a stage when the treatment has not even been tested for efficacy! It talks of educating patients. So that should mean telling the patients that whether or not they have the treatment the outcome is likely to be the same in two and a half years time.
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I have just posted elsewhere that the core paper seems not to be the 1989 one but Cognitive Behavioural Management of Post-viral fatigue Syndrome by Wessely, Butler, Chalder and David in Post-viral Fatigue syndrome (Myalgic Encephalomyelitis) 1991 eds Jenkins/Mowbray. It may be that Simon Wessely has made this generally available but I have not checked. I think Sharpe may have made an understandable slip of the metaphorical pen when referring to the 1989 paper.
 
chrisb said:
I have just posted elsewhere that the core paper seems not to be the 1989 one but Cognitive Behavioural Management of Post-viral fatigue Syndrome by Wessely, Butler, Chalder and David in Post-viral Fatigue syndrome (Myalgic Encephalomyelitis) 1991
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I forget exactly what material is in each but my memory is that it is the 1989 one in which Chalder explains how you have to do CBT. I may be wrong.
 
Jonathan Edwards said:
But saying there is no reason why it should is an opinion. It may be a very reasonable opinion but it is not based on any hard evidence that there is a process that could not benefit. As I have mentioned before, exercise is good for RA, despite making symptoms worse in the short term and having nothing to do with the core pathology. The problem is that if weak arguments are given a high profile it is very easy for nobody to take any notice. Gibson implies that we know there is some core pathology - but we don't. Combating bad science with bad science is not going to get us anywhere.
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My argument is different to that of Gibson. CBT and GET depend upon a model for which there is no reasonable ground for belief. The onus is upon them to prove it.
 
chrisb said:
My argument is different to that of Gibson. CBT and GET depend upon a model for which there is no reasonable ground for belief. The onus is upon them to prove it.
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But if we say that, surely they just come up with another model, the current favourite seems to be we all have MUS caused by central sensitisation.

And they can still say, if the CBT doesn't work, it's not because the underlying model is wrong, it's just because they need to refine the CBT techniques, or move on to ACT or mindfulness or some other therapy, or the patients don't want to get better.

Didn't some of them put the blame for the FINE trial not working on the nurses not doing the therapy properly? And wasn't one of the nurses quoted as saying something like 'these damned patients just don't want to get better'. Model intact.

The BPS model is neither provable nor disprovable with therapies, I think, so trying to fight them on the grounds of models seems counterproductive.

The only way I can see to disprove the model once and for all is to find a cast iron biomarker and/or a biomedical treatment that cures ME.
 
chrisb said:
My argument is different to that of Gibson. CBT and GET depend upon a model for which there is no reasonable ground for belief. The onus is upon them to prove it.
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This is the difference between a science base and an evidence base. Medicine is evidence-based, despite what the homeopaths and Eastern mystics claim.

Leflunomide was developed on the basis that RA was a T cell disease and leflunomide targeted T cells. It works as well as most drugs of its time. But we now know that RA is not a T cell disease. We have also learnt that the pathways targeted by leflunomide are not unique to T cells. So an effective drug was developed based on a wrong model. If the drug company had been forced to prove the T cell model the drug would never have been developed. Scientific models are only ever pointers in medicine. They are not what determines whether a treatment should be used.
 
ScottTriGuy said:
Frightening.

I hope she leaves the profession soon.
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Not wanting to horrify anyone further, her actual words were "The therapist patient relationship is like a love affair, which can only work if the patient allows themselves to be vulnerable". I think I must have let my usual poker face slip, because she then back-tracked / clarified by saying "what I mean is, it's like a parent-child relationship".

I've got so used to listening to this kind of stuff that I forget what it sounds like to others, especially ME sufferers. And no, she's not leaving the profession soon.

As long as I get my money at the end of the lesson ...
 
@Jonathan Edwards I accept your point but would again think there are points to distinguish. In your example there was no prior experience to counter the suggestion that the drug might work. In the case of CBT and GET there was ample evidence in rebuttal in the narratives of the patients of other doctors. There was simply never a good reason to believe in the efficacy of these "therapies".
 
TiredSam said:
Not wanting to horrify anyone further, her actual words were "The therapist patient relationship is like a love affair, which can only work if the patient allows themselves to be vulnerable". I think I must have let my usual poker face slip, because she then back-tracked / clarified by saying "what I mean is, it's like a parent-child relationship".
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It sounds a bit like saying that the therapy works when the therapist is allowed to interpret reality for the patient.
 
strategist said:
It sounds a bit like saying that when the therapist is allowed to interpret reality for the patient, the therapy works.
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It's actually worse than that, and upon reflection now I realise I could horrify forum members a whole lot more with some of the things I've learnt, but I still like to try to maintain a veneer of confidentiality and professionalism by not gossiping out of turn.
 
chrisb said:
I think you must have got your posts muddled. Did that belong with the one quoting the therapist?
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It was a reply to @JemPD's question (which I quoted for the avoidance of confusion) about the therapist's therapeutic orientation, with a link to her therapeutic orientation (hermaneutic psychodynamic psychosocial blah blah), and another link to a thread where her therapeutic orientation is discussed, amongst a lot of rowdy behaviour from the rest of the forum.

What's the muddle?
 
chrisb said:
There was simply never a good reason to believe in the efficacy of these "therapies".
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That I absolutely agree with. The treatments were assumed to be effective at the point of introduction and no adequate testing was ever carried out.

The rebuttal by patients should have been taken into account, but again one has to be careful. Intramuscular gold for RA developed a reputation for 'making people end up in wheelchairs'. That was because it was given to people with a disease that in those days often meant ending up in a wheelchair. For someone not familiar with RA, seeing a relative deteriorate so catastrophically with no other apparent cause than the gold injections it would be tempting to think the injections were to blame. But although gold has serious side effects I don't think there is any evidence that it ever exacerbates the arthritis. We always have to gather evidence under controlled conditions. We know how to do that. What is peculiar about the situation in ME has, I think, a lot to do with the fact that therapist-delivered treatments have never been subjected to proper regulation and scrutiny.
 
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