Why MEpedia is flawed and potentially harmful to advocacy

[Jonathan Edwards]

I could be way off base here but I thought that PACE was part of the rational for the NICE guidelines for ME. In which case no-one needs to have heard of PACE they are simply following the guidelines?

Actually, as Charles Shepherd has pointed out, the NICE guidelines were written before PACE so PACE is not the reason for the guidelines and so if they are followed it is not because of PACE.

I realise that PACE documents may get waved in some places, and maybe particularly in Holland, where PACE chums have a presence it seems. But in general terms I think it is a misconception to think PACE caused CBT. The truth is that CBT caused PACE. PACE was designed to make psychotherapists kosher, because they were useful to doctors.Therapists do a great job because they keep the patients busy with appointments every few weeks, which means the doctor does not have to do anything for a few months. That was the standard usage of physios when I went into rheumatology and I assume it is the standard usage of psychotherapists still. So the answer to why physicians use CBT is just that it gets the patients off their backs and at least somebody is saying something to the patients on a regular basis, which might actually help some patients if the person is intelligent and sympathetic. So CBT is justified by its usefulness to doctors - nothing to do with usefulness to patients.

Maybe the psychiatrists realised that their therapist handmaidens were in a weak position with the rise of evidence based medicine and decided to do a trial to make them official and ensure their jobs were safe. The problem is that the trial is of the sort that physics used to do in the 1970s - quite useless. The rheumatologists decided to focus on their own reputation as new evidence based physicians and cut the physics out of the equation. But that was no real problem because with the onset of new therapies we could justify appointing hundreds more physicians and we had time to see the patients often (and needed to for the new drugs) so the physics were no longer an asset.

I am sorry if this is off topic but it might be interesting to put some of this on the MEpedia CBT page!

 

[Undisclosed]

Please note this thread was started in order to discuss MEpedia, not specific research etc. Please limit your discussion to the topic of the thread.

Thank you.

 

[Glycon]

the answer to why physicians use CBT is just that it gets the patients off their backs and at least somebody is saying something to the patients on a regular basis, which might actually help some patients if the person is intelligent and sympathetic. So CBT is justified by its usefulness to doctors - nothing to do with usefulness to patients.

I think I get what you're trying to say (even though you're kinda contradicting yourself here ). But are we talking CBT in general, or (more specifically) CBT for ME/CFS, or (more specifically still) only CBT as a "cure" for ME/CFS? PACE did not cause CBT, as you rightly point out, but neither did CFS cause CBT. It may be more prominent in psychiatry than its merits empirically warrant (for reasons investigation of which would make a fascinating study in the history of science), but it simply isn't the snake oil that too many people around here seem to assume it to be.

It is important to remember that CBT is only harmful to people with ME/CFS insofar as it may be too taxing itself or encourage them to overly exert themselves. If one approaches it as an optional tool for managing the illness and/or psychological issues secondary to the illness, there is nothing intrinsically wrong with it, especially in the less severe cases. (Of course, such a change in approach would also make a difference in its content.)

The practical problem is not CBT per se, or even doctors recommending CBT to us. The practical problem is its use to "treat" what we now know is not a somatoform illness, as well as the institutionalization of this "treatment" to the detriment of patients and research.

 

[Jonathan Edwards]

It is important to remember that CBT is only harmful to people with ME/CFS insofar as it may be too taxing itself or encourage them to overly exert themselves. If one approaches it as an optional tool for managing the illness and/or psychological issues secondary to the illness, there is nothing intrinsically wrong with it, especially in the less severe cases. (Of course, such a change in approach would also make a difference in its content.)

The practical problem is not CBT per se, or even doctors recommending CBT to us. The practical problem is its use to "treat" what we now know is not a somatoform illness, as well as the institutionalization of this "treatment" to the detriment of patients and research.

Do we have any reliable evidence to support any of that, Glycon?

CBT was harmful to my wife when she had a serious illness that needed another form of treatment - it wasted time. What illnesses do we know benefit specifically from something called CBT? And what exactly is that CBT? What evidence have we that you can cognitively change behaviour just by saying the sorts of things that would seem likely to do so?

In the past I knew pretty little about CBT. When my wife had it it seemed to be a joke. Having got to know about PACE and the CBT literature around it I have come to think nobody really knows what CBT is. You cannot measure it like a dose of aspirin or the shape of a hip replacement. So it is almost impossible to know whether it is, as I suggested somewhere before, just a matter of wearing a nice blue cardigan and smiling. That may sound harsh to people in the psychology profession but I think people in the psychology profession are going to need to justify their beliefs rather better in the future on lots of counts.

 

[Glycon]

CBT was harmful to my wife when she had a serious illness that needed another form of treatment - it wasted time.

That's why I said "intrinsically"...

What illnesses do we know benefit specifically from something called CBT? And what exactly is that CBT?

Depression, as well as, like, most common mental illnesses. Just because treating ME/CFS with CBT is dumb doesn't mean it doesn't work for genuine mental disorders. The extent of its efficacy is questionable, of course, but so is everything else in psychiatry.

That is not to say that other treatments should be ignored in favor of CBT, of course. (For the record, I don't have experience with it myself, but it has been suggested to me by really competent doctors, who would never suggest it as a treatment for ME/CFS. For a long time I thought that my symptoms were largely caused by depression. And I really did have depression, secondary to ME/CFS and the ruinous impact it had had on my life. I was prescribed varous antidepressants and eventually they worked. I'd also been offered CBT, but that never happened because I would have had to go to the other end of town and, you know, CFS.)

What evidence have we that you can cognitively change behaviour just by saying the sorts of things that would seem likely to do so?

Wait, are you seriously doubting that we can "cognitively change behavior"? Like, that's a huge part of what planning and intentional action are about! And surely you know that CBT isn't just about "saying things"!

When it comes to milder cases, CBT is relatively effective. So much so, that it isn't always clear that medication alone is better. There are general diffuclties in measuring effectiveness of psychiatric treatments, of course, but they are not unique to CBT.

Having got to know about PACE and the CBT literature around it I have come to think nobody really knows what CBT is. You cannot measure it like a dose of aspirin or the shape of a hip replacement.

That's why I asked whether you mean CBT in general, or CBT as it is applied by the UK proponents of the "biopsychosocial model". What leads to confusion is that ME/CFS is so obviously not just a mental disorder (even if we suppose, for the sake of argument, that it has a psychological component) that attempts to treat it with CBT give the wrong impression of what it may legitimately accomplish. It can help someone with anxiety or OCD accomplish certain tasks, but it could never help someone with paralysis. Because, you know, that would be magic.

And you can "measure it" just fine, in the sense that the amount of therapy a patient receives is quantifiable. There are other problems with rigorous testing of CBT's effectiveness, but that isn't one of them.

=======

But, as interesting as these issues are, I believe we're getting off topic.

 

[Undisclosed]

Please note this thread was started in order to discuss MEpedia, not specific research etc. Please limit your discussion to the topic of the thread.

Thank you.

I really should only have to ask once to keep a thread on topic.

Thank you.

 

[Leopardtail]

Yes, I was just starting to read the thread before dinner and that my general thought was to strongly agree with your first post. I have not read through a lot of MEpedia entries recently but I can see a potential problem for advocacy.

I think that if MEpedia is going to serve its community it is going to need to be choosy in the same way. You can put things on Wikipedia without citing published evidence but you rapidly get told to find a citation. The problem for MEpedia is the shortage of experts to act as moderators - but without them you are likely to get a mass of stuff that may be as disinformative as informative.

I Things need to move on and the evidence base firm up for the rest of the world to take ME seriously.

For a disease that's been honestly researched I would agree. M.E. has not well executed honest research is sadly still the minority position and it's seldom repeated - this has led to cult hero worship of CBT & GET and a truly harmful Wikipedia page full of misinformation.

When the now much more professional standard of research has delivered an effective knowledge base then that more formal approach will be very productive. At the moment there is an insufficient body of evidence for that to do anything but harm.

Not a single one of the ten treatments that have delivered significant benefit to me would get through the Wikipedia process.

 

[Leopardtail]

I base the comment on conversations with consultant physician colleagues who work at places like UCH, Great Ormond Street Hospital and other London teaching hospitals. They had never heard of a PACE trial. I think people get a distorted idea of just how much influence PACE has in the UK. Wider patterns of clinical practice may well be a problem but I am not sure that clinicians base that on PACE. If anything PACE seems to have had more influence elsewhere as far as I can see. I am happy to contribute to the effort to make the poor quality of the PACE trial better known but I don't think it is the reason why physicians in the UK use CBT - at least not in London teaching hospitals.

I have experienced at least eight GPs who have treat me like I was stupid and used PACE as their justification for a wide range of harmful advice (much of it not even advocate d off proven by PACE), it's constantly cited by those defending CBT and GET in general practice. It's widespread publication and discussion in prominent journals and national newspapers did vast harm.

London is very different to the rest of the country, a great deal of expertise is aggregated there.

I think the point most of us are trying to make however is that making MPedia research (I.e. evidence) lead first requires good evidence. The efforts of @alex3619 have produced substantial improvement for a fair number of our members however that 'evidence' is purely colloquial.

I think we are all thirsting for the evidence that that will allow MPedia, Wikipedia and medicine in general to operate at the standard enjoyed by diabetes and Arthritis patients. Right now if those standards of evidence were applied we'd have no useful advice at all.

Actually, as Charles Shepherd has pointed out, the NICE guidelines were written before PACE so PACE is not the reason for the guidelines and so if they are followed it is not because of PACE.

PACE was used by NICE as grounds for putting the ME guidelines onto the static list so the effect has been significant.

 

[Leopardtail]

I've often wondered how we could hire a PR (Public Relations) firm. It's so difficult for so many of us to advocate for ourselves.

ME Action (not Action For ME) is already fund raising to do that.