'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

[Dolphin]

The big question to me is what is it that allows a supposedly intelligent person to ignore good evidence, and to accept poor quality evidence in its place? Is peer pressure and the need for approval really that strong an influence? The ironic thing is that the psychologists should be only too aware of that, as they have been doing experiments on peer pressure for ages. Or do the ones holding the disbelieving views think that it only applies to the rest of the human race?

A problem is that an awful lot of people depend on the experts in a field and the data they produce to be fair and accurate. Most people can't read that many full research papers that come out: they depend on abstracts and summaries of fields. So it's understandable I feel if somebody (who didn't follow ME/CFS closely) thought the evidence was the PACE Trial found a recovery rate of 22% for CBT and GET, for example. Professionals depend on researchers and the peer-review process to be rigorous and fair.

When I got diagnosed first, I was angry at individual professionals I had come across, for not diagnosing me earlier and not warning me about the risks of exercise. However, they were just going on what the experts in the field had said. I would now mainly point the finger for bad attitudes at "experts" like Peter White.

 

[Graham]

I understand your point, Dolphin, but to be honest, much of that is sheer laziness and unprofessionalism. If, as a teacher, I had actually believed all the stuff told me by "experts" in education, without actually thinking properly about it for myself, I'd have run myself ragged jumping through all sorts of stupid hoops. Many of the errors in the PACE trial are really basic: not even GCSE level maths. So if a person's job was to push CBT or GET on people with ME, I would expect, at the very least, for them to have worked through the PACE trial and similar studies, and not just relied on the system. Mind you, the banking system collapsed for pretty much the same reason!

 

[Dolphin]

I understand your point, Dolphin, but to be honest, much of that is sheer laziness and unprofessionalism. If, as a teacher, I had actually believed all the stuff told me by "experts" in education, without actually thinking properly about it for myself, I'd have run myself ragged jumping through all sorts of stupid hoops. Many of the errors in the PACE trial are really basic: not even GCSE level maths. So if a person's job was to push CBT or GET on people with ME, I would expect, at the very least, for them to have worked through the PACE trial and similar studies, and not just relied on the system. Mind you, the banking system collapsed for pretty much the same reason!

I suppose it depends at what level you mean "push CBT or GET on people with M.E." i.e. how many cases such a professional is dealing with. A GP has to know about thousands of conditions and I believe depends on experts rather than trying to be an expert on everything themselves. To be honest, I think I'd find being a GP difficult for this reason: I like to get in to the nuts-and-bolts of things.

 

[Kati]

I concur with @Dolphin with this example. Physicians' reference apps or website all point in the PACE trial direction. Try the Cochrane database for example. Also our provincial website has public explanation regarding ME which discusses CBT and GET. It's everywhere. It's not about the physicians being lazy, it's about medical information propaganda.

 

[user9876]

I understand your point, Dolphin, but to be honest, much of that is sheer laziness and unprofessionalism. If, as a teacher, I had actually believed all the stuff told me by "experts" in education, without actually thinking properly about it for myself, I'd have run myself ragged jumping through all sorts of stupid hoops. Many of the errors in the PACE trial are really basic: not even GCSE level maths. So if a person's job was to push CBT or GET on people with ME, I would expect, at the very least, for them to have worked through the PACE trial and similar studies, and not just relied on the system. Mind you, the banking system collapsed for pretty much the same reason!

There seems to be a whole industry around CBT where people don't read or believe the evidence. There has been a big debate over CBT for psychosis where a meta analysis suggests its not very helpful yet psychiatrists and psychologists are still ranking it as an important treatment as is NICE.

I wonder if part of the reason is people believe the hype and because of that they don't read between the lines of the spin. In addition people don't understand statistics. I tend to think that perhaps more interactive ways of sharing trial results would be better than simple paper presentations now that technology allows that.

 

[Sean]

I wonder if part of the reason is people believe the hype and because of that they don't read between the lines of the spin.

They don't want to find out and have to admit how wrong they, the 'experts', have been, with all the consequences that entails for their status, authority, and income, not to the mention for the hapless patients they were supposed to be helping.

 

[chipmunk1]

The big question to me is what is it that allows a supposedly intelligent person to ignore good evidence, and to accept poor quality evidence in its place? Is peer pressure and the need for approval really that strong an influence? The ironic thing is that the psychologists should be only too aware of that, as they have been doing experiments on peer pressure for ages. Or do the ones holding the disbelieving views think that it only applies to the rest of the human race?

Because Mind over Matter was never a scientific discovery based on observations or reasoning. Even if they want you to believe it was.

It started out as a belief system and it still is. Studies in this area are not being done because they want to discover something they do them to support their belief system. It has not so much to do with intelligence, intelligent people can be manipulated emotionally just like everyone else. All starts with a group of people who believe in something and who consider themselves experts in the field. They want to believe in crap and nothing will stop them from doing so.

Why they want to believe that isan interesting question that i could not answer. I would love to understand why they want to believe in that and what they gain from that. Maybe it gives them a feeling of authority or power because unlike others they in full control of their destiny and understand how life works. In my opinion a lot of what is being done today will be considered borderline insane a few decades from now.

 

[Wildcat]

.
User9876 wrote:
"There seems to be a whole industry around CBT where people don't read or believe the evidence. There has been a big debate over CBT for psychosis where a meta analysis suggests its not very helpful yet psychiatrists and psychologists are still ranking it as an important treatment as is NICE.

I wonder if part of the reason is people believe the hype and because of that they don't read between the lines of the spin. In addition people don't understand statistics."

~~~~~~~~~~~~~~~~~~~~~~~~~~


.
‘CBT superiority questioned at conference' by researchers at Strathclyde University, Miami University and the Saybrooke Graduate Institute; a review which unpicks the Myths about CBT.

http://www.uea.ac.uk/mac/comm/media/press/2008/july/CBT superiority questioned at conference

Mon, 7 Jul 2008

‘The idea that Cognitive-Behavioural Therapy (CBT) is more effective than other types of therapy is a myth, according to leading psychotherapy experts attending a major conference at the University of East Anglia (UEA) today.

The US and UK researchers will present data and critical analyses that debunk the widespread belief in the superior effectiveness of CBT……


…..Professors Mick Cooper and Robert Elliott (both University of Strathclyde), William B Stiles (Miami University) and Art Bohart (Saybrook Graduate School) will issue the following joint statement today:

"The government, the public and even many health officials have been sold a version of the scientific evidence that is not based in fact, but is instead based on a logical error. This is how it works: 1) More academic researchers subscribe to a CBT approach than any other. 2) These researchers get more research grants and publish more studies on the effectiveness of CBT. 3) This greater number of studies is used to imply that CBT is more effective.

"This is a classic example of the logical fallacy known as 'argument from ignorance' ie the absence of evidence is taken as evidence of absence.

"Although CBT advocates rarely make this claim so boldly, their continual emphasis on the amount of evidence is misunderstood by the public, other health care workers, and government officials, a misunderstanding that they allow to stand without correction. The result is a widespread belief that no one takes responsibility for. In other words, a myth.”……

……. ‘"In view of these and other data, it is scientifically irresponsible to continue to imply and act as though CBTs are more effective, as has been done in justifying the expenditure of £173m to train CBT therapists throughout England.

Such claims harm the public by restricting patient choice and discourage some psychologically distressed people from seeking treatment. We urge our CBT colleagues and government officials to refrain from acting on this harmful myth and to broaden the scope of the Improving Access to Psychological Treatments (IAPT) project to include other effective forms of psychotherapy and counselling."...........


.

 

[chipmunk1]

"Although CBT advocates rarely make this claim so boldly, their continual emphasis on the amount of evidence is misunderstood by the public, other health care workers, and government officials, a misunderstanding that they allow to stand without correction. The result is a widespread belief that no one takes responsibility for. In other words, a myth.”……

not true.. they do this all the time, every time CBT gets questioned you hear how superior and effective it is compared to other treatments. It resembles a cult or a religion.

 

[Graham]

I suppose it depends at what level you mean "push CBT or GET on people with M.E." i.e. how many cases such a professional is dealing with. A GP has to know about thousands of conditions and I believe depends on experts rather than trying to be an expert on everything themselves. To be honest, I think I'd find being a GP difficult for this reason: I like to get in to the nuts-and-bolts of things

You are right about GPs, Dolphin, but to be honest I was thinking of all the people involved in the ME/CFS clinics who should have a responsibility to look at the research data carefully. I don't blame GPs for not having the time to check all the research, but I do blame the rest of the psychology camp who should be keeping their house in order.

 

[Esther12]

You are right about GPs, Dolphin, but to be honest I was thinking of all the people involved in the ME/CFS clinics who should have a responsibility to look at the research data carefully. I don't blame GPs for not having the time to check all the research, but I do blame the rest of the psychology camp who should be keeping their house in order.

Yeah - I'm totally with you here, and also share Dolphin's views about GPs. Given the information they are provided on CFS (especially in the recent past 1995-2005), it's pretty hard for GPs to not be shitty.

 

[Bob]

Here's an intelligent, detailed & crushing critique of the PACE trial's "recovery" criteria...
The article was recently published in response to a paper by Adamowicz et al. ("Defining recovery in chronic fatigue syndrome: a critical review"), which has been discussed in another thread (click here).


Assessment of recovery status in chronic fatigue syndrome using normative data
Alem Matthees
Quality of Life Research
11 October 2014
http://link.springer.com/article/10.1007/s11136-014-0819-0

The article is behind a paywall, but if you click on 'look inside' then you can actually read the whole article, minus the references. And you can find the list of references underneath the abstract, using the above link.

 

[Tired of being sick]

Poll>>>Has anyone had success with graded exercise?

 

[Graham]

Well yes, the psychologists and therapists have made a lot of money delivering it.

 

[Dolphin]

An independent researcher, Beth Smith, criticised the PACE Trial's recovery definition at the NIH P2P meeting, "Advancing the Research on ME/CFS":

Across the spectrum of chronic diseases different forms of therapy show improvement. That is a very different thing from cure. I did not include the evidence on recovery. The reason is that it was poorly evaluated. When it was, the outcomes were inconsistent and were flawed as far as measuring recovery, One large trial [PACE] had an inclusion of an SF-36 of 60. They then changed that criteria to less than 65 to improve recruitment. But when they looked at measures of recovery they used an SF-36 of 60 as one of the measures of recovery. So there is a contradiction on measures of cure or recovery. There are also Chalder fatigue scores of less than 4 as normal, and in another trial they looked at Chalder fatigue scores of 18. You could get to a score of 18, but does that really reflect recovery? In looking at the evidence, recovery was not well measured as an outcome. I would encourage researchers to set some standards for recovery.

From: http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=19495

 

[Dolphin]

FOI request idea:

Process of treatment
We do not know the mechanisms of successful treatment for CFS/ME. Do illness beliefs or focusing of attention on symptoms (symptom focusing) need to be changed for CBT to be effective? Or do CBT and GET both work by improving tolerance to activity? Is increased physical fitness essential to recovery or not? How important is the alliance between therapist and patient? Is it necessary to adapt to the limitations imposed by the illness to reduce fatigue? A greater understanding of these processes will shed light on the essence of improvement and allow the development of more efficient treatments.

from the protocol: http://www.biomedcentral.com/1471-2377/7/6

It would thus be interesting to get the step test results for the so-called recovered individuals. They haven't published on this.

----
Also the PACE Trial protocol ends:

Discussion
The PACE trial will be the largest randomised trial of available treatments for CFS/ME. It will provide important information about efficacy, adverse events, cost-effectiveness, process and predictors. This will inform patients, their carers, healthcare providers and commissioners which treatments are most useful for which patients, and provide information regarding the essential process of both recovery and improvement from CFS/ME.

They just published the recovery rates, not information on the "process of recovery in CFS/ME".

 

[Ecoclimber]

I believe this gets to the heart of the matter that the psychsocial research model gets a free pass when it comes to scientific research. In the biomedical research field, evidence claim is not supported unless replication using the exact same standards and data can verify.

Cover-up of data to prevent scientists from reaching the same conclusion - as in the case of the xmrv debacle and retraction in Science - is cause for retraction.

Many in the general public and news/medical meda outlets are led to believe that biomedical scientific research and the psych/social model of research are on the same level playing field when in fact they are not! An effective strategy is to hammered home the difference.

For advocacy, Twitter this to various news and medical media outlets that might be interested:
#PaceTrial: As in XMRV, Without Replication, No Pontification!
#PaceTrial: As in XMRV, Without Replication, No Pontification! @WesselyS @rcpsych @TheLancet https://tinyurl.com/kz6xcge https://tinyurl.com/l7na6b8

 

[Dolphin]

(This may have been pointed out in this thread before perhaps)

This is how recovery was defined in the PACE Trial's protocol:

4. "Recovery" will be defined by meeting all four of the following criteria: (i) a Chalder Fatigue Questionnaire score of 3 or less27], (ii) SF-36 physical Function score of 85 or above47,48], (iii) a CGI score of 145], and (iv) the participant no longer meets Oxford criteria for CFS2], CDC criteria for CFS1] or the London criteria for ME40].

http://www.biomedcentral.com/1471-2377/7/6

I used to say that they changed three of the four elements of this (not the last part). However somebody has pointed out that one can say they changed all four:

Composite definitions of recovery We operationalized two composite definitions of recovery : (1) trial recovery from CFS, and (2) clinical recovery from the illness, however it was defined. To provide a definition of trial recovery, we calculated a hierarchical, cumulative definition that included the following domains mentioned earlier : normal range in fatigue, normal range in physical function, not meeting the Oxford case definition of CFS, and CGI scores of 1 or 2 (‘very much’ or ‘much’ better). To fulfil the criteria for clinical recovery from the illness, participants had to meet all the criteria for trial defined recovery (described earlier), in addition to not meeting either the International (CDC) criteria for CFS or the London criteria for ME.

The last part of the protocol criteria requires that none of the three criteria are satisfied. That is only required for the "clinical recovery" not "trial recovery".
Though statistics for both are given in the paper, "trial recovery" is the one that is focused on and numbers given for in the abstract though they do say: "Similar proportions met criteria for clinical recovery". This is true: the numerical difference is not big in this case.

Anyway, to be able to say they changed all elements of the trial's recovery criteria is interesting.

 

[alex3619]

not true.. they do this all the time, every time CBT gets questioned you hear how superior and effective it is compared to other treatments. It resembles a cult or a religion.

How much of this is due to questionnaires? First you indoctrinate someone for months. Then you ask them how they think about it. I forget who, but someone on PR called this modification of question answering behaviour or similar.

Could it be that much of the apparent success of CBT is due to it measuring attitudes after brain washing? How is this confounding issue being ignored?

 

[chipmunk1]

How much of this is due to questionnaires? First you indoctrinate someone for months. Then you ask them how they think about it. I forget who, but someone on PR called this modification of question answering behaviour or similar.

Could it be that much of the apparent success of CBT is due to it measuring attitudes after brain washing? How is this confounding issue being ignored?

it could be due to brainwashing, it might not be. No one knows and no one wants to find out.

There seems to be a whole industry around CBT where people don't read or believe the evidence. There has been a big debate over CBT for psychosis where a meta analysis suggests its not very helpful yet psychiatrists and psychologists are still ranking it as an important treatment as is NICE.

That is because they have so little to offer. CBT= desperation. You use it when there is little understanding of the underlying disease process and a lack of effective treatments.