Michael Sharpe skewered by @JohntheJack on Twitter

He wasn't stating that the do not have ME, but he was stating that their subset of patients who fulfilled a (somewhat questionable) ME criteria only came from the group of patients who were selected via the Oxford criteria, which required that fatigue was their primary symptom.

 

This is so confusing! Does he know himself what's right and wrong? Now what is it? Did they study chronic fatigue? Did they study people with any illness having chronic fatigue, too? Had people chronic fatigue right away and were misdiagnosed (with ME; or MS, cancer, Lupus...)? I really don't get it.

Edit: @Esther12, I still don't get it. It is known they used Oxford criteria. It is known they stated Oxford criteria select people with ME/CFS; now he's restricting that. It sounds like "yeah, it was probably suggested to have studied ME/CFS (falsely by others, we never did that) but we actually looked at CF".

 

From QMUL FAQ: https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/faq2.pdf

 

As I understand it the PACE authors position is consistent on this. They did not recognise a specific 'disease' called ME and were not trying to study it. They were interested in chronic fatigue that was not explained by some other illness like MS. The Oxford criteria were designed to detect that. They noted afterwards that a percentage of patients fulfilled criteria for ME, and reported that for the interest of those who wanted to know.

The use of a broad category of unexplained fatigue, defined by Oxford, is not in itself unscientific. It would be capable of producing results representative of such a group. The real problem for the BPS crowd is that the ONLY rationale for using CBT is that the fatigue is specifically due to inappropriate beliefs prolonging recovery from a physical illness. Moreover, those beliefs would have to be entrenched enough to require CBT to reverse rather than just being told 'all you need to do is realise you will get better if you do a bit more'. And these patients for whom CBT was designed would be very unlikely to be enrolled because they would firmly believe GET would hurt. (If they did not have this firm belief CBT would not be relevant to them.)

So the real problem for the PACE authors is that they chose to use a recruiting system that specifically excluded people who would be suitable for their treatment ON THEIR OWN THEORY. So their theory could never have been tested. Whoever was recruited was obviously not in need of CBT. The fact that they said they were better simply shows that people say what they are told to say.

 

It doesn't look like CBT/GET work when forced on a person being sectioned for the apparent purpose of giving them this treatment.

I don't see the Hansen family praising Fink for curing Karina of her false illness beliefs.

 

Fair enough.. That's quite a get-out for them though - 'we never said we were studying ME'. And it doesn't quite gel with the extent to which they've tried to control the landscape for ME patients.

That seems unanswerable, and is the clearest evidence yet, to my mind at least, that they didn't understand their own model.

 

Although they say this, I believe they used a modified version of the London criteria.

My understanding is that Ellen Goudsmit was one of the authors of the London criteria and was rather annoyed they refer to it as the London criteria when is is not precisely that.

More slipperiness.

 

The notion that patients are suffering from fear of exertion while simultaneously having the tendency to overexert themselves is also incoherent.

 

Yes this is especially significant when they have been congratulating themselves on providing evidence for NICE all these years and going around the world claiming to have recovered people and that up to 60% etc recover.

 

So is their theory that CBT and GET are two distinct forms of treating a fear based psychological problem. In CBT/GET for fear based problems, CBT contains the theory part and GET contains the practice. No therapy involving CBT for fear based problems would exclude GET. No GET therapy would exclude CBT.

If you are doing CBT with a therapist, it is expected that you will take what you have learned and apply it (homework). The application would be in a gradual building up of exposure to the thing you fear. Without the actual application, the patient is just learning theory without practice. The patient will not believe the theory unless it has objective results.

If you are doing Gradual Exposure Therapy with a therapist, the patient will not do the activity without reassurance. If the patient could do the activity without the theory, they would not need the therapy in the first place. Even if the theory is not presented in a formal manner, the therapist would have to explain and reassure the patient. If there was no need of this, the patient is highly unlikely to do the activity.

The basis for CBT/GET for fear is this:

• You can persuade a nervous person to overcome an obstacle without formal therapy. (The nerves are rational.)

• You cannot persuade a terrified person to overcome an obstacle without some form of therapy. (The terror is irrational)

• The whole point is to transform the patient from being terrified to being nervous.

• This is possible by showing, by theory and practice, that the terror is a result of catastrophic thinking.

Without the terror, the patient does not have a fear that requires the therapy. The terror is the irrational thoughts and behaviours that stop the patient.

Source: My actual experience with CBT and Gradual Exposure Therapy for non ME related Illness, and my owning the CBT therapist manual for my treatment.

 

If I understand it correctly - also taking @Jonathan Edwards's post into account - their primary goal was to study "fatigue" (however defined...) in a symptom cluster called "CFS", which they defined via the Oxford criteria. Some of those (per chance?) also fulfilled other criteria, their own London "ME" criteria. They were not looking at "fatigue" in other diseases.

How was "fatigue" defined?

Following their definition, CFS and ME are viewed as different.

There remains the impression this is all mixed-up. There also remains the impression they were testing their claim that CFS and/or ME are psychogenic (fatigue that cannot be explained by other known illnesses), but they didn't say it explicitly.

Edit: Plus @Invisible Woman's post - it seems they used modified London criteria.

 

Michael Sharpe posted today a comment under a German tweet from the tiny MillionsMissing Germany account – and he wasn't even tagged or alerted but found it on his own.

The German post was the quote from Carol Monaghan ("... PACE will be considered one of the biggest scandals ...") translated into German. He wasn't tagged and reacted on the same day, so he apparently searches twitter for the hashtag #pacetrial. Makes him look a little desperate.

https://twitter.com/user/status/1001360168960036871

 

It might be interesting to see how many times internet sites carrying the PACE paper (PubMed etc) have been downloaded recently. It might turn out that rather a lot of people have read the paper!

 

Sharpe follows an account called CFS research, which claims to belong to a recovered patient whose tweets are very pro CBT, GET, and PACE. Happily, that means that MS saw this tweet from physicist Sten Helmfrid,https://twitter.com/user/status/1001393932117430272

 

What's he doing? This gets strange and stranger.

Maybe someone is paid to post under Sharpe's name? Or has Mr. Sharpe retired and that's why he has so much time for this? It puzzles me.

It seems he's always starting similarly: "Yeah really? Did you read the paper?"

What's his agenda?

 

In addition to what Trish said, maybe he's just desperate and has no idea how to deal with the situation.

 

How's that complaint of Myhill's going? Maybe it's got him all shook up (a-huh-huh).

 

About the PACE subgroups...I had an exchange of letters on NY Times site with the PACE authors on this issue in 2011, after I wrote a story on case definition that they didn't like. They wanted a correction, but my editor gave me a chance to respond to their disinformation. As Esther12 said, they defined everyone by Oxford. Then they had a Fukuda subgroup and a so-called London ME subgroup. One problem is that neither Fukuda nor the ME criteria require that fatigue be the primary complaint. People with Fukuda have to have six months of fatigue, but their presenting or primary symptom could be cognitive dysfunction, PEM, sleep dysfunction--any of the other symptoms in the group. The ME criteria also doesn't include fatigue as the primary symptom. You need three separate groups to make the comparisons--not subgroups when the larger group is already defined.

Heres' the article, followed by the letter exchange:

https://www.nytimes.com/2011/03/08/health/research/08fatigue.html

https://www.nytimes.com/2011/03/15/...atedCoverage&region=Marginalia&pgtype=article

 

As Spike Milligan said, I think:

The boy stood on the burning deck,
Whence all but he had fled..

TWIT.

Edit This was intended to follow the post of Strategist, not Dave.