'“ME can be beaten by taking more exercise.” Really?' by Ellen Goudsmit PhD on PACE Trial

[Dolphin]

'“ME can be beaten by taking more exercise.” Really?'
by Ellen Goudsmit MSc PhD FBPsS on #PACEtrial
http://www.axfordsabode.org.uk/me/ME-PDF/PACE trial the flaws.pdf

 

[Dolphin]

"Whichever way you present this, the theory behind CBT and GET as tested in the PACE trial seems very psychological"

 

[Dolphin]

To sum up, the operant conditioning theory is out-dated and illogical, it relies on speculation and some highly questionable assumptions relating to gains, and it has little empirical support. Considering the complete cognitive-behavioural model, adherents have to ignore or dismiss evidence of ongoing pathology and limit the study of improvement to common and subjective symptoms such as fatigue and sleep disturbance.

 

[Dolphin]

CBT offered to patients with multiple sclerosis or cancer is different. I can see it helping many people with classic ME who become depressed or anxious. But the versions promoted by the PACE trial assume that the symptoms are largely the result of psychological (cognitive and behavioural) problems. I can’t interpret their arguments in any other way.

 

[Dolphin]

One can not deny that a percentage of the people who completed the trial rated CBT and GET as helpful and recorded scores indicating improvements in fatigue and physical functioning.

It's a pity she doesn't inform people of the general lack of improvements on objective outcome measures. Fatigue and physical functioning were both measured by questionnaires which could be subject to response biases.

 

[Skippa]

Awwww Ellen, you giveth with one hand, and taketh away with the other.

 

[hellytheelephant]

When one of these geniuses gets ME then cures themselves using exercise THEN I will believe it!

 

[alex3619]

When one of these geniuses gets ME then cures themselves using exercise THEN I will believe it!

How will you know if they really had ME? Their word? Barry Marshall did it with H pylori but then he had identified the specific pathogen, and so knew what to do about it. Many who believe in the psychogenic stuff seem to believe ME = CFS = TATT. The contradictions and counter-evidence do not seem to bother them.

So if one of them gets tired for a few months after having to defend their publications, declare they have CFS, and cure them selves with GET, what will it really prove?

 

[Sean]

Good article.

Though I do agree with Dolphin about the importance of the results from other objective or relatively objective measures that were used at outcome, such as the 6 Minute Walk Distance test, employment level, service usage, and receipt of welfare/insurance benefits, all of which failed to support claims about both the practical clinical value of CBT and GET, and the primary causal role of psychosocial factors.

The data from those measures matter as much as the actometer data.

 

[anciendaze]

Please note that the reports that patients approved of the therapies they received were brought to us by PACE authors themselves. We don't know what those patients said that did not fit on the questionnaires. I suspect one reason the authors are so upset with the idea of releasing more information is that this might allow other researchers to contact patients who were reported as approving of PACE and discover their unedited opinions. This then becomes a matter of "patient privacy". Those researchers who might undermine their conclusions are accused of "research parasitism".

We have already heard that one needs to have many years experience in public health to properly interpret results. This sounds very much like a requirement for know-who rather than know-how.

 

[Dolphin]

Ellen Goudsmit‎ to ME Association https://www.facebook.com/permalink.php?story_fbid=1190968497589833&id=171411469583186
6 hrs ·
Get your no-nonsense info on the PACE trial from a highly qualified psychologist. New version with more details.
http://www.axfordsabode.org.uk/me/ME-PDF/PACE trial the flaws.pdf

 

[Justin30]

I absolutely got a kick out of this analogy:

treatment like GET is simply not appropriate for a disease like ME which is linked to infection and metabolic abnormalities. Given the close relationship between exertion and symptoms, it follows that asking a patient to increase their activity levels is as logical as advising smokers with lung cancer to gradually increase the number of cigarettes they smoke.

Lol....just like the one specialist asked me today why is it that you can't exercise...well I said even walking from your room to the bathroom caused me...dizziness, vertigo, hip pain, blurred vission, etc. Then he told me there are know known Neurological disease that cause this. Then I said what about ME it explains all of it and he said we are never taught about ME in schools. Then he kindly told we only know about 30% of what goes on in the brain....obvisiouly....

 

[alex3619]

Then he kindly told we only know about 30% of what goes on in the brain....obvisiouly....

I would put that figure at more like 3%. Our knowledge of the brain is so very far from being complete. We only discovered some gross anatomy of the brain last year (the lymphatic drainage). The brain is the most complex thing we are studying in science, and most of what we think is just theory. We are learning, but its so very slow.

As technology advances we might get the tools we need to advance brain science faster. I think that any great advance would have been impossible prior to the computer revolution. Scanning and imaging technology also need to advance more.

Imagine you were a doctor in 1916. How effective would you be compared to a modern general or primary care practitioner? That is where psychs and neurologists are now. They are just learning, but mostly stumbling around in the dark. Much of what they know is right, much is wrong, but its what they don't know that dominates.

 

[Sea]

Please note that the reports that patients approved of the therapies they received were brought to us by PACE authors themselves. We don't know what those patients said that did not fit on the questionnaires. I suspect one reason the authors are so upset with the idea of releasing more information is that this might allow other researchers to contact patients who were reported as approving of PACE and discover their unedited opinions. This then becomes a matter of "patient privacy".

Data sharing does not involve other researchers being allowed to know or contact research participants.

 

[anciendaze]

Data sharing does not involve other researchers being allowed to know or contact research participants.

Agreed. The catch is that research participants may recognize a peculiar sequence of data as matching their own experience, and contact those other researchers. We've already seen how the authors feel about allowing patients to talk to other patients. Imagine how they feel about allowing them to talk to competing researchers.

 

[alex3619]

There is nothing stopping researchers from publicizing an investigation and asking PACE trial participants to contact them. So they do not need to recognize their own data. However this does require data to be available.

 

[anciendaze]

There is nothing stopping researchers from publicizing an investigation and asking PACE trial participants to contact them. So they do not need to recognize their own data. However this does require data to be available.

Precisely! This is the terrible danger those authors are determined to avoid -- in the name of protecting patients.

Incidentally, someone should tell the rest of the medical profession that these same authors have not only said a high percentage (30%) of CFS diagnoses by others are wrong, while these same authors are apparently infallible, and all those doctors trying to treat such patients by any means except CBT and GET are incompetent. This is arrogance amounting to hubris. It is also a deliberate roadblock to research progress.

An assumed drop in rate of misdiagnoses to zero, without exceptional supporting evidence, is a strong indication of a pure argument-from-authority wherever it appears. We seem to have a clique saying L'Etat, c'est moi. Does this bother the rest of the profession?