Do more people recover from chronic fatigue syndrome with CBT or GET than with other treatments?

[Dolphin]

I think that they were deliberately referring to the Matthees blog there, maybe as it was cited for those figure in Wilshire?

Okay, I have deleted this point.

 

[user9876]

Great work to everyone involved in the Wilshire paper.... White at al. clearly had nothing of substance that they could pick up on.



I'm surprised that they said that. They must have known that it was not true.

I think it is a measure of how good a review paper Wilshire et al's paper is that they couldn't come up with any coherent defense.

 

[Dolphin]

Then they move on to the Flo study which used the same BS criteria as PACE... how can they think that this is helping to justify their criteria changes? It's just noise.

Yes Flo & Chalder is quite similar. Note also the Chalder was involved:

Recovery was defined as no longer meeting either the CDC- criteria or the Oxford criteria. A total recovery score was defined as no longer meeting the CDC- criteria and the Oxford criteria, and feeling much better/very much better and scoring below 18 on the CFQ and scoring 65 or higher on the SF-36.

Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behav Res Ther. 2014;63:1–8.

 

[Dolphin]

Here is a paper they refer to. Note that the recovery criteria are much stricter than those used in the 2013 PACE trial recovery paper.

Predetermined criteria for “complete recovery” required that patients no longer met chronic fatigue syndrome criteria, were employed full-time, and scored less than 4 on the Fatigue Questionnaire and more than 83 on the Medical Outcomes Study Short-Form General Health Survey physical functioning scale.

Deale A, Husain K, Chalder T, et al. Long-term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study. Am J Psychiatry. 2001;158:2038–2042.

 

[Esther12]

Yes Flo & Chalder is quite similar. Note also the Chalder was involved:

Yeah - I shouldn't have said 'same'. I think that Flo and Chalder cite PACE to justify their criteria though, so to have PACE try to cite Flo to justify their criteria just turns it into a weird loop!

 

[Dolphin]

Here are the full recovery criteria used in Knoop et al. (2007) that is referred to.

Read from "combining criteria of":

Note the lack of use of objective measures.

 

[Molly98]

I am no scientist and I struggle to make sense of statistics etc, but as a lay person I am just puzzled by their continual need to defend this. Cancer drugs are being shown to work with ME patients, CBT and GET are now looking like nonsense and farcical as treatments for ME,things have moved on scientific advances have made these approaches insignificant and obsolete , why are they unable to drop it and move on, what is the point in continually trying to prove what now just look absurd no matter how they spin it. And why are they so insistent and persistent in deliberately attempting to halt and put a stop to scientific advancement and therefore treatment for Patients. Is this normal in the field of science and medicine or is it unique to ME?

 

[A.B.]

I am no scientist and I struggle to make sense of statistics etc, but as a lay person I am just puzzled by their continual need to defend this. Cancer drugs are being shown to work with ME patients, CBT and GET are now looking like nonsense and farcical as treatments for ME,things have moved on scientific advances have made these approaches insignificant and obsolete , why are they unable to drop it and move on, what is the point in continually trying to prove what now just look absurd no matter how they spin it. And why are they so insistent and persistent in deliberately attempting to halt and put a stop to scientific advancement and therefore treatment for Patients. Is this normal in the field of science and medicine or is it unique to ME?

We are probably not dealing merely with egos unable to admit mistakes, but with people having some sort of financial gain from CBT/GET being seen as useful treatment.

Their connection to the health insurance industry is known. I believe their universities also sell CBT/GET training courses. There may be other significant sources of income.

I wish a good investigative journalist would look into this.

Then of course PACE is such a massive fraud that it will hurt their careers badly once it becomes more widely known.

 

[Dolphin]

https://twitter.com/i/web/status/832273649117835264

 

[Dolphin]

https://twitter.com/i/web/status/832279111506751488

 

[Esther12]

why are they unable to drop it and move on, what is the point in continually trying to prove what now just look absurd no matter how they spin it.

They can't. They don't want to be thought of as quacks. At this point, there is no way for them to back away quietly.

 

[Molly98]

They can't. They don't want to be thought of as quacks. At this point, there is no way for them to back away quietly.

Yes I agree @Esther12, but why don't they recognizes that attempting to continually defend their position is making them appear more and more like quacks, the more attention they draw to it the further up they go on the quackery scale.

And I just don't see where it's heading. In a few years time we could have the possibility of a number of immunoregulatory drugs and others which are successful for many patients, what patient in their right mind is then going to choose GET or CBT with such a low success rate, even by their fabricated standards and actually with a history of harm.

Or is the idea that they will plan to withhold and successful treatments from us in the UK and still make GET and CBT the only option?

 

[Solstice]

Yeah - I shouldn't have said 'same'. I think that Flo and Chalder cite PACE to justify their criteria though, so to have PACE try to cite Flo to justify their criteria just turns it into a weird loop!

Paceception, or paception.

 

[Esther12]

Yes I agree @Esther12, but why don't they recognizes that attempting to continually defend their position is making them appear more and more like quacks, the more attention they draw to it the further up they go on the quackery scale.

To me, it seems that they're writing pieces intended to be read in isolation by people who trust them. To those of us who know the details, have read Wilshire, etc, it looks absurd. Most people in UK medicine aren't that interested. They just want to be able to say "I read their defence of their work and it seemed perfectly sensible to me". In those terms, White's response is pretty good imo, and that's the best they can do. It gives the impression of engaging in the sort of scientific debate we like to pretend is a part of science, but lets them avoid acknowledging how badly they messed up.

 

[slysaint]

We are probably not dealing merely with egos unable to admit mistakes, but with people having some sort of financial gain from CBT/GET being seen as useful treatment.

plus the whole IAPT MUS thing relies on it.

 

[Esther12]

We changed these thresholds for our detailed analysis plan because,
after careful consideration and consultation, we concluded that they were simply too strin-
gent to capture clinically meaningful recovery [8].

I think this is a lie. They didn't mention recovery in there statistical analysis plan. They refer to their paper which is a post-hoc evaluation and not a detailed analysis plan.

There they cite their recovery paper [8], not their statistical analysis plan. It looks like more clever-clever evasion that makes them seem even more untrustworthy to those who know the details, but will be hard to call them on.

 

[Mohawk1995]

And why are they so insistent and persistent in deliberately attempting to halt and put a stop to scientific advancement and therefore treatment for Patients. Is this normal in the field of science and medicine or is it unique to ME?

This is not uncommon in the field of medicine or science itself at all unfortunately. Many treatments have been created as a result of "research" (even some of it considered Gold Standard) which have later been dismissed as not as effective or not even effective. In addition many forms of treatment, in particular multi-modal interdisciplinary approaches, have been very difficult to prove with research, but have been successful from an Empirical standpoint. It usually takes somewhere between 15 to 20 years for something to become "standard of care" and by the time it is, another more effective treatment is labeled as quackery (until it is finally recognized 15 years later).

The other point with this research is that if 22% of the CBT or GET participants were "recovered" don't you think there would be more people on this web site (and others) touting the benefits of the programs? It is simply non-sense and does not match what I have seen personally or what I have read about ME/CFS. They are living in the "City of Ember". Walls cracking and falling apart all around them and yet still holding on to the belief that all is well with themselves and the work they do!

 

[slysaint]

"Our finding that 22% of participants recover from the current episode of CFS after either CBT or GET"

what is this supposed to mean when relating to a fluctuating illness?

eta.where's the sarcastic /this is rhetorical emoji?

 

[dyfalbarhau]

"Our finding that 22% of participants recover from the current episode of CFS after either CBT or GET"

what is this supposed to mean when relating to a fluctuating illness?

"We qualified what we said, so you can't say we were wrong or liars: this can improve 22% of people for an unspecified amount of time. We do not mean "recovery" in anything but this restricted, technical sense. But we won't actually be this explicit because that opens us up to all sorts of criticism and paints the wrong picture."

 

[BurnA]

"Our finding that 22% of participants recover from the current episode of CFS after either CBT or GET"

what is this supposed to mean when relating to a fluctuating illness?

The thing is, while ME symptoms may fluctuate, that does not mean patients have an episode of ME. I have never seen ME described as a disease where patients have episodes. Not saying it absolutely never happens, but fluctuations do not mean episodes.