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PhoenixRising is ridiculous (rant) (self.cfs)

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[–]vicar-me-baby -4ポイント-3ポイント  (4子コメント)

I quite agree with the funding and studies aspect. I added my comments to the page on HBO.

I am talking about hyperbole against CBT in particular and to a lesser degree GET. I often see CBT denounced as if its use implies a psychological cause of CFS, and there is much anger over it, which I cannot fathom. I have no idea where the idea that CBT implies a psychological cause of CFS comes from; especially as it is used to help (for example) cancer patients in the exact same way.

My best guess is that some practitioners of CBT are giving that impression somehow, or communicating poorly with the patients.

That said, CBT and GET don't work for anyone, and neither is a cure. I've had improvements from both, but they were not permanent, alas.

[–]analoguefade 4ポイント5ポイント  (3子コメント)

I have no idea where the idea that CBT implies a psychological cause of CFS comes from; especially as it is used to help (for example) cancer patients in the exact same way.

I'll tell you exactly where it comes from. It comes directly from the investigators of the PACE trial themselves, the singular study that is used worldwide to justify use of CBT/GET for this disease. They are not using it in the way it's used for cancer. The way they are using it is like saying that CBT can cure cancer.

See for yourself:

CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant's symptoms and disability. Therapeutic strategies guided participants to address unhelpful cognitions, including fears about symptoms or activity by testing them in behavioural experiments.

And a similarly ridiculous rationale was used for GET:

GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. These changes result in the deconditioning being maintained and an increased perception of effort, leading to further inactivity. The aim of treatment was to help the participant gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability.

This is why there is so much anger towards these treatments. There is ample evidence that CFS is not due to cognitive/behavioral responses nor is it due to deconditioning and this evidence existed during the time of this trial. Further, there are grave concerns regarding the methodology of the trial. It was only single blinded, non placebo controlled with no objective outcome measures and the investigators did some underhanded shit at the end by changing the definition of "recovered", saying that you could be recovered if you ended with a worse score than when you entered. The investigators refuse to answer if this change was made after the results were unblinded to them. To this day the investigators and UK government refuse to release the raw data from the trial so that it can be analysed by a third party. This trial cost the UK taxpayers over 5 million pounds. Hopefully this gives you a better understanding of why people have such a strong negative reaction to the use of CBT/GET for this disease.

[–]vicar-me-baby -3ポイント-2ポイント  (2子コメント)

Yeah, that's exactly and precisely what I meant by "bad data".

This sort of misinformation damages patients directly (by making them reluctant to get treatment) and indirectly (by making researchers less wiling to investigate possible psychological treatments). It has, in extreme cases, even led to death threats against researchers - some of whom have stopped their work.

The information you have there is bad information. You seem to be quoting the introduction to the study (though those words appear nowhere in the white paper) where they describe the theory behind the tretment they are going to test. If they were testing homeopathy, then that would read something like "The theory regards magic properties of water which has a memory and works on the basis of like cures like."

Also, the psychological aspect, like that same aspect with cancer, is only assumed to be partially responsible for a patient's problems.

From the CBT therapists's manual for the study:

The aim of treatment is to change certain behaviours and cognitive factors, which are assumed to be partially responsible for perpetuating the symptoms and disability associated with CFS/ME

It's a sound theory, and well worth testing.

Oh most impotance, of course, is what the study found. And that's nothing like you claim at all.

We concluded that CBT and GET were more effective than APT and SMC and that the size of the effect was moderate... we are now analysing in more detail what makes these treatments work, and will report this.

And, of course, stated quite explicitly on that page, is the very question we are addressing:

Does the effectiveness of CBT indicate that CFS is a psychological condition?

No. The effectiveness of cognitive behaviour therapy (CBT) as a treatment for CFS does not make assumptions about the nature of the illness. Pigeon-holing CFS as either physical or psychological is not helpful as many if not all illnesses have elements of both. CBT is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain. There is also evidence that CBT can have an effect on the body. For instance it has been recently found to reduce repeat heart attacks in people who have had a first attack. This is because CBT helps to change behaviour, which in turn changes the functioning of the body.

Can't get much clearer than than. The PACE trial authors clearly state in no uncertain terms that the effectiveness of CBT cannot be linked to any psychological cause and also reiterate quite clearly that the CBT treatment used is the same as for other chronic, physical conditions.

The misinformation out there is appalling, but it is widespread.

The ridiculous misinformation about GET is much the same.

Continuing to spread and perpetuate these myths can and will damage patients today, as they may be unwilling to take the only treatments which are known and proven to be effective - even if they do not help everyone.

Oh, and you are wrong about PACE being a singular study used to justify anything at all. It isn't. It's one of a set of studies. It's the biggest study to date, with no other studies showing anything like as good data.

That's another bit of misinformation which has been widely spread about, alas.

[–]analoguefade 2ポイント3ポイント  (1子コメント)

You sound like a shill for the BPS school. The only people I ever see referencing that Guardian story are people that don't believe ME is a real disease and wish to do damage to patients by associating them all with a few aggressive outliers. It really has nothing to do with what we're talking about here and it's a pathetic attempt to discredit anybody who doesn't happen to agree with the BPS theories.

The information you have there is bad information.

It's not bad information. It's pasted directly out of the 2011 PACE trial paper which I linked to. It's their theory and the basis of their experiment. I don't give a shit if they like to doublespeak and say the opposite on their website. The investigators of this trial and their colleagues are very much on record with their beliefs about this disease. These theories are expanded on in the CBT manual you linked to, with the ridiculously oversimplified graphic on page 21. They completely ignore all of the objective signs and symptoms of this disease and focus plainly on fatigue. Should patients just ignore their symptoms of orthostatic intolerance and push through until they become severely hypotensive and pass out on the floor injuring themselves? Should they ignore their polyuria and become severely dehydrated? Should they ignore hypoglycemia until they slip into a hypoglycemia coma? Should they ignore the pain from activity until they develop severe intractable pain 24/7? The model that they have put forward for this disease is ridiculous and the criteria that they used to select patients is equally ridiculous. When you look at it in depth and take into account the work of people like Lenny Jason, you quickly realize that what these British psychs are studying likely has nothing to do with ME. How can you justify applying the findings of a study to a group of patients that weren't even studied?

I really don't understand what it is you hope to gain by heavily promoting CBT and GET here to other patients. The British ME Association recently released a report on CBT and GET and concluded that both interventions in their current form should not be used as a primary intervention for this disease. They advise that an appropriate model of CBT, one used to address comorbid anxiety, depression, and stress should be used, but not a model that advises ignoring symptoms and pushing activity. They advised complete withdrawal of GET until it can be determined exactly which patient subtypes can safely tolerate activity.

You can't take the evidence from one group and just assume it's accurate. If you take the whole of evidence available into account the results are inconclusive and the evidence in favor of CBT/GET is of low to moderate quality, as pointed out in the recent AHRQ paper. In my opinion this is not enough to justify the use of potentially dangerous therapies to a group of poorly studied and poorly characterized patients as a whole.

I will continue to spread the truth of this situation because to ignore it can and will damage patients.