Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

[Hutan]

none particularly ideological,

I find that an odd statement @petrichor. Everyone has ideologies, and some are more useful than others. Some are worth holding onto and some are changed by what we learn. An ideology that 'sound scientific enquiry helps to understand if treatments work' is a useful ideology for this review. An ideology that 'we know GET works because we use it in our clinics and people get better and there's nothing wrong with the trials that have been done and nothing will make me re-evaluate my beliefs' is not so useful.

Have you not seen the public statements made by Julia Newton? Also, presumably, being the Associate Medical Director of the Newcastle- upon-Tyne Hospitals NHS Foundation Trust and having a deep and long-standing interest in CFS, she either wrote or signed off on the Trust's comments on NICE ME/CFS Guideline draft (from page 422 in Part 1 of the comments). The Trust's comments seem to me rather ideological in an unhelpful way when it comes to the task of evaluating evidence in a careful and unbiased way.

Here the Trust is talking about people with severe ME/CFS, where apparently their problems are their anger, their involvement in patient groups, their misguided belief that they can't get better and their voluntary reduction in activity levels:

Additionally, clinical experience has demonstrated the presence of anger in the patient group towards staff. Clinical experience has also demonstrated the difficulties in engaging people with severe CFS/ME in rehabilitation. Our experience has indicated this is largely to do with most severe patients reporting being members of patient groups and having a negative view of the specialist teams before they come. It would be interesting to find out if the 9 who reported moving from moderate illness status to severe over the course of the illness held the belief that there was nothing they could do about their condition and also used the envelope theory, thus reducing their activity levels at the perception of an increase in symptoms.

Here's a little of the criticism of expert testimonies and particularly that of @Jonathan Edwards, revealing an ideology that non-pharmacological interventions are somehow special and not amenable to being studied in trials that reach normal scientific standards.

We are particularly concerned by the testimony of Prof Edwards. He was asked to address the subject of ‘The difficulties of conducting intervention trials for the treatment of ME/CFS’. In our opinion, he significantly over-reaches the scope of his brief. It would have been much more helpful to discuss the types of treatment modality that might be trialled in CFS/ME and what the gold standard trial design would be for those modalities.

We are not convinced that Prof Edwards has the necessary expertise and knowledge in clinical trials of non-pharmacological interventions to make this assessment. For example, it is flawed logic to suppose that a trial of CBT or other psychological therapy should somehow attempt to separate the effect of the therapy per se from the effect of the therapeutic relationship. In real clinical practice, it is impossible to have one without the other, and a trial must reflect this reality.

Here there seems to be an ideology of clinicians knowing best what goals people with ME/CFS should have, and ignoring the substantial uncertainty there is about illness trajectory. The Trust seems to have the ideology that they can be objective about how much fatigue and disability can be reduced for a particular patient. Further, they seem to have the ideology that identifying psychological factors that are maintaining the condition will lead to recovery:

It is important we communicate to patients realistic goals depending on their own disability, not the disability of others. Individual plans help patients to achieve their realistic goals. It is important that we are as objective as possible with patients in terms of the amount of fatigue and disability that can be reduced.

Patients need to understand the complexity of the illness and medical/psychological testing will help to understand the complexities of the condition. Identifying factors that are maintaining the condition is a way out of the disability

Here the Trust seems to have the ideology that ME groups hold an unrealistically pessimistic view of the illness and that informed ME/CFS patients are very angry people. They seem to have the ideology that these people being 'very angry' about a particular issue means that they are both wrong and are just generally very angry people. That ideology is surely not conducive to understanding what the 'very angry' people are actually complaining about.

Most patients who use specialist services report that online information and ME groups have frightened them and many patients felt that online information from patient groups are ‘all doom and gloom’ and that Facebook Groups are all ‘very angry’ people. We would agree that NHS services would benefit from developing less biased information on the interventions for CFS/ME.

Here the Trust makes clear that their treatment approaches are based on the evidence that NICE found was useless. Clearly, there is an enormous incentive for the Trust to overturn the findings of NICE. Such a conflict of interest makes for strongly held ideologies.

Within the North of Tyne CFS/ME specialist team we are have constructed training packages for GPs, Medical assessors, mental health professionals, patient information on sleep, emotions, CBT, pacing, communicating with others, graded activity. These are all based on the evidence which has been rejected by the NICE 2021 committee. Therefore, we are at a loss to know what education we would be able to pass on to others.

We would not support patients accessing information from ME organisations as we do not share the same model of CFS/ME.

Here the Trust's comment suggests that people will be advised to push through their symptoms. It also, in its reference to 'the CBT model of CFS/ME' seems to suggest that 'catastrophic thoughts about harming oneself' is a feature of the illness. And again, it reveals a strongly held ideology that patient groups don't understand ME/CFS.

Within the CBT model of CFS/ME – once a baseline is set and the patient understands their current energy capacity and keeping within this capacity – therapy would discourage patients from monitoring their symptoms. A fluctuation in energy levels and symptoms is ‘normal’ in everyday life for us all. When a patient knows they are working within their capacity, the CBT model helps them to challenge catastrophic thoughts about harming themselves if they stay within their capacity levels which they may have developed over several weeks. CBT uses activity sheets to monitor activity levels to help the patient understand if there is any particular reasons for symptom increase. The criticism comes from patient groups, and is NOT representative of all people with CFS/ME.

I find it rather worrying that you would count Julia Newton as 'one of the best possible people who could have been chosen for this'. Perhaps you can explain why I am wrong to be concerned?

 

[adambeyoncelowe]

I find that an odd statement @petrichor. Everyone has ideologies, and some are more useful than others. Some are worth holding onto and some are changed by what we learn. An ideology that 'sound scientific enquiry helps to understanding if treatments work' is a useful ideology for this review. An ideology that 'we know GET works because we use it in our clinics and people get better and there's nothing wrong with the trials that have been done and nothing will make me re-evaluate my beliefs' is not so useful.

Have you not seen the public statements made by Julia Newton? Presumably, being the Associate Medical Director of the Newcastle- upon-Tyne Hospitals NHS Foundation Trust and having a deep and long-standing interest in CFS, she either wrote or signed off on the Trust's comments on NICE ME/CFS Guideline draft (from page 422 in Part 1 of the comments). The Trust's comments seem to me rather ideological in an unhelpful way when it comes to the task of evaluating evidence in a careful and unbiased way.

Here the Trust is talking about people with severe ME/CFS, where apparently their problems are their anger, their involvement in patient groups, their misguided belief that they can't get better and their reduction in activity levels:



Here's a little of the criticism of expert testimonies and particularly that of @Jonathan Edwards, revealing an ideology that non-pharmacological interventions are somehow special and not amenable to being studied in trials that reach normal scientific standards.



Here there seems to be an ideology of clinicians knowing best what goals people with ME/CFS should have, and ignoring the substantial uncertainty there is about illness trajectory. The Trust seems to have the ideology that they can be objective about how much fatigue and disability can be reduced for a particular patient. Further, they seem to have the ideology that identifying psychological factors that are maintaining the condition will lead to recovery:




Here the Trust seems to have the ideology that ME groups hold an unrealistically pessimistic view of the illness and that informed ME/CFS patients are all very angry people. They seem to have the ideology that these people being 'very angry' about a particular issue means that they are both wrong and are just generally very angry people. That ideology is surely not conducive to understanding what the 'very angry' people are actually complaining about.



Here the Trust makes clear that their treatment approaches are based on the evidence that NICE found was useless. Clearly, there is an enormous incentive for the Trust to overturn the findings of NICE. Such a conflict of interest makes for strongly held ideologies.



Here the Trust's comment suggests that people will be advised to push through their symptoms. It also, in its reference to 'the CBT model of CFS/ME' seems to suggest that 'catastrophic thoughts about harming oneself' is a feature of the illness. And again, it reveals a strongly held ideology that patient groups don't understand ME/CFS.



I'm assuming @petrichor, that you are involved with the Cochrane Review, presumably representing the 'patient point of view'. I find it rather worrying that you would count Julia Newton as 'one of the best possible people who could have been chosen for this'. Perhaps you can explain why I am wrong to be concerned?

I had similar concerns about that clinic's responses, but I don't know who wrote them.

 

[petrichor]

I find that an odd statement @petrichor. Everyone has ideologies, and some are more useful than others. Some are worth holding onto and some are changed by what we learn. An ideology that 'sound scientific enquiry helps to understand if treatments work' is a useful ideology for this review. An ideology that 'we know GET works because we use it in our clinics and people get better and there's nothing wrong with the trials that have been done and nothing will make me re-evaluate my beliefs' is not so useful.

Have you not seen the public statements made by Julia Newton? Also, presumably, being the Associate Medical Director of the Newcastle- upon-Tyne Hospitals NHS Foundation Trust and having a deep and long-standing interest in CFS, she either wrote or signed off on the Trust's comments on NICE ME/CFS Guideline draft (from page 422 in Part 1 of the comments). The Trust's comments seem to me rather ideological in an unhelpful way when it comes to the task of evaluating evidence in a careful and unbiased way.

Here the Trust is talking about people with severe ME/CFS, where apparently their problems are their anger, their involvement in patient groups, their misguided belief that they can't get better and their voluntary reduction in activity levels:



Here's a little of the criticism of expert testimonies and particularly that of @Jonathan Edwards, revealing an ideology that non-pharmacological interventions are somehow special and not amenable to being studied in trials that reach normal scientific standards.



Here there seems to be an ideology of clinicians knowing best what goals people with ME/CFS should have, and ignoring the substantial uncertainty there is about illness trajectory. The Trust seems to have the ideology that they can be objective about how much fatigue and disability can be reduced for a particular patient. Further, they seem to have the ideology that identifying psychological factors that are maintaining the condition will lead to recovery:




Here the Trust seems to have the ideology that ME groups hold an unrealistically pessimistic view of the illness and that informed ME/CFS patients are very angry people. They seem to have the ideology that these people being 'very angry' about a particular issue means that they are both wrong and are just generally very angry people. That ideology is surely not conducive to understanding what the 'very angry' people are actually complaining about.



Here the Trust makes clear that their treatment approaches are based on the evidence that NICE found was useless. Clearly, there is an enormous incentive for the Trust to overturn the findings of NICE. Such a conflict of interest makes for strongly held ideologies.



Here the Trust's comment suggests that people will be advised to push through their symptoms. It also, in its reference to 'the CBT model of CFS/ME' seems to suggest that 'catastrophic thoughts about harming oneself' is a feature of the illness. And again, it reveals a strongly held ideology that patient groups don't understand ME/CFS.



I'm assuming @petrichor, that you are involved with the Cochrane Review, presumably representing the 'patient point of view'. I find it rather worrying that you would count Julia Newton as 'one of the best possible people who could have been chosen for this'. Perhaps you can explain why I am wrong to be concerned?

I wasn't really talking about Julia Newton when I talked about "the best possible people". I meant more "the best possible people under the circumstances", which are not entirely optimal circumstances. I agree that Julia Newton is not an optimal choice, but I assume Cochrane felt pressured to include someone to include some kind of pro-GET clinician, and I think she's likely better than other options that could have been chosen.

 

[Hutan]

I also don't know if you're suggesting I have some kind of direct involvement with this cochrane review? Because I don't

Ah, ok, I just assumed based on your post (copied below) where you said that you have learned more about the people involved in the process as time has gone on. There hasn't been any public news about the process that I'm aware of for quite some time, not since we last talked about the people involved.

As time has gone on and I've learnt a little bit more about some of the people on the author team and the IAG (and thought about some of the other options) I actually think they're better than I expected, and they could well be some of the best possible people that could have been chosen for this (none particularly ideological, some of them maintain interests and general skepticism about methods and the ways things are done in evidence based medicine).

I think we can agree that some at least hold ideologies that are unhelpful for a considered evaluation of the evidence. I'm interested to know what you have learned recently that makes you feel that some are better than you expected?

 

[JohnTheJack]

What do you mean by this?

After Montgomery's letter to the committee, I sent the attached response to him. He passed it on to the HRA who replied as follows:

Thank you for your letter dated 27 April 2019 to Professor Sir Jonathan Montgomery on the subject of the PACE trial.

Professor Sir Montgomery has passed on your letter to the Health Research Authority from where it is being acknowledged in line with our complaints procedure.

On this occasion we do not have further comment to offer beyond our letter of 29 January 2019 to Norman Lamb which can be read in full on our website.

I have copied the letter (attached) to a few people but nothing came of it. Misleading parliament is a very serious matter. I would note in particular in this regard points 9 and 13.

 

[petrichor]

Ah, ok, I just assumed based on your post (copied below) where you said that you have learned more about the people involved in the process as time has gone on. There hasn't been any public news about the process that I'm aware of for quite some time, not since we last talked about the people involved.



I think we can agree that some at least hold ideologies that are unhelpful for a considered evaluation of the evidence. I'm interested to know what you have learned recently that makes you feel that some are better than you expected?

When I say I've learnt more about the people as time has gone on, that's from places like twitter, looking people/things up out of curiosity, and trying to learn more about how GRADE/cochrane reviews other things work. Sorry if the way I phrased it was misleading

I'm also not really denying that some people hold unhelpful ideologies, particularly Newton, but at least they don't seem to be an extremely strong kind of ideology (apart from possibly Newton).

The people who I've been increasingly impressed with are David Nunan, Mary Dimmock, Hilda herself (largely from coming across her blogs), George Faulkner, and Mike Clarke. Probably mainly Hilda and David Nunan I've been increasingly impressed with from coming across things by them on twitter/blogs/journal articles. Because they seem like relatively skeptical and open minded people.

 

[Hutan]

I agree that Julia Newton is not an optimal choice, but I assume Cochrane felt pressured to include someone to include some kind of pro-GET clinician, and I think she's likely better than other options that could have been chosen.

Perhaps Cochrane felt pressured to include some kind of pro-GET clinician. Perhaps they actively sought one out. But the one they chose not only has a career tied to delivering GET in a clinical setting, she also has a long career in ME/CFS research, making her conflicts of interest particularly deep and unshakeable. She has much more at stake than the average pro-GET clinician.

The people who I've been increasingly impressed with are David Nunan, Mary Dimmock, Hilda herself (largely from coming across her blogs), George Faulkner, and Mike Clarke. Probably mainly Hilda and David Nunan I've been increasingly impressed with from coming across things by them on twitter/blogs/journal articles. Because they seem like relatively skeptical and open minded people.

I too googled David Nunan and thought he might be ok. But, have you seen this thread and the company he has kept? Hopefully despite that, he will be ok.

I was looking at David Nunan's publications, because he is on the 2021 Cochrane ME/CFS Exercise Therapy Review. And I saw this publication and thought, super, maybe this guy will be ok, because he's familiar with all of the sources of bias. And I thought, oh, that list of things to be aware of is pretty good, I'll post it on S4ME. And in the process, I see we already have a thread on it.

So, David Nunan was the person on the 2021 Cochrane review I was really hoping would be good. Maybe he will be. But looking at this, and all of the Cochrane reviews he has done, he's very much associated with Cochrane.

 

[petrichor]

Perhaps Cochrane felt pressured to include some kind of pro-GET clinician. Perhaps they actively sought one out. But the one they chose not only has a career tied to delivering GET in a clinical setting, she also has a long career in ME/CFS research, making her conflicts of interest particularly deep and unshakeable. She has much more at stake than the average pro-GET clinician.


I too googled David Nunan and thought he might be ok. But, have you seen this thread and the company he has kept? Hopefully despite that, he will be ok.

I don't recall seeing that thread. I'm not sure to what extent you can judge people by the company they keep (by that I mean I'm genuinely not sure). In things I've seen from him he's talked about how higher standards of evidence should be applied to exercise than what's currently done, and expressed frustration at how people don't seem to want to apply the same rigor they apply to other interventions to exercise. I've also by chance seen some replies from him on twitter where he seemed genuinely skeptical and open minded (although I don't remember exactly about what)

 

[Caroline Struthers]

What Cochrane are doing with this review is pointless. NICE have done it. NICE had a team truly independent of the guideline committee, and with equipoise, assess the evidence and find it seriously wanting. The IAG is not independent as it has been hand-picked by Hilda who was appointed by Cochrane. Also NICE did the evidence assessment for all interventions for people with ME/CFS, not just exercise therapy. It doesn't matter how suitable or unsuitable the Cochrane team is, it's completely redundant work that no longer needs to be done by Cochrane or anyone else. If Cochrane cared about people with ME/CFS, they would withdraw the two remaining CFS reviews and attempt to mitigate the damage caused by the findings from those reviews still being used to make clinical decisions. The "findings" are also being used to criticize NICE for their allegedly "perverse" use of GRADE. I would say using GRADE to avoid downgrading certainty of evidence by subtly slipping in that it's "moderate" certainty evidence for a "non-zero" (aka clinically meaningless) effect, is perverse.

 

[Adrian]

The "findings" are also being used to criticize NICE for their allegedly "perverse" use of GRADE. I would say using GRADE to avoid downgrading certainty of evidence by subtly slipping in that it's "moderate" certainty evidence for a "non-zero" (aka clinically meaningless) effect, is perverse.

We can give a strong message that if GRADE finds (or allows some to find) that what are really poor quality trials (with measurements that are highly subject to bias and a lack of control for different expectiations) then it does not mean that the trials provide moderate evidence but that GRADE is not fit for purpose. By some of the GRADE authors sticking their heads above the sand and saying if correctly applied then everything would be ok with these trials they are opening their work up for careful examination and criticism - something that should have been done as it was developed.

 

[Hutan]

What Cochrane are doing with this review is pointless.... It doesn't matter how suitable or unsuitable the Cochrane team is, it's completely redundant work that no longer needs to be done by Cochrane or anyone else.

Yes. Pointless from our point of view. I am sure there are some who see the Cochrane review as an opportunity to fight back against the NICE findings and make everything as it was. Which is why the people involved matter.

As time has gone on and I've learnt a little bit more about some of the people on the author team and the IAG (and thought about some of the other options) I actually think they're better than I expected, and they could well be some of the best possible people that could have been chosen for this (none particularly ideological, some of them maintain interests and general skepticism about methods and the ways things are done in evidence based medicine). So I'm relatively optimistic.

Some information I have seen recently about Peter Gladwell (who is on the IAG) has added, rather than reduced, concern. Gladwell's article about the use of TENS for ME/CFS is discussed here. His article, which aimed to inform doctors, is the opposite of evidenced-based medicine. And we are relying on him to help hold the writing group to high scientific standards.

I don't recall seeing that thread. I'm not sure to what extent you can judge people by the company they keep (by that I mean I'm genuinely not sure). In things I've seen from him he's talked about how higher standards of evidence should be applied to exercise than what's currently done, and expressed frustration at how people don't seem to want to apply the same rigor they apply to other interventions to exercise. I've also by chance seen some replies from him on twitter where he seemed genuinely skeptical and open minded (although I don't remember exactly about what)

Yes, some of the projects he worked on look really good, indicating a good understanding of evidence evaluation. But he worked on some of those projects with some of the people who wrote the very flawed Cochrane Exercise Review that this new process aims to replace. So:
1. producing material promoting good evidence evaluation is clearly not a guarantee of actually doing good evidence evaluation, and
2. we don't know what influence Nunan's past and present Cochrane colleagues (some of whom have reputations tied to the previous exercise review) might have on him.

I'm trying to think of things we can do that actually make a difference to the review. There's probably not much now. But, at least we can make sure that people with ME/CFS are aware of the unfounded prejudice, conflicts of interest and lack of knowledge that a substantial number of the people who will be determining the content of the new exercise review bring to the task.

 

[Adrian]

Right, but of course this didn't work in the case of the Health Research Authority report on the PACE trial because their purview appears to be limited. They couldn't fault PACE because they decided all the T's were crossed and i's dotted as per the standard process (even though this wasn't really the case), but they had no authority to judge whether any of the changes made sense.

The HRA isn't an audit body in that it doesn't actually do checks. They expect certain documentation to be sent and check it ticks their boxes. An auditor would go in and demand access to all the information and select randomly from that to look for evidence that what is being claimed is actually happening. I.e. the processes that the trial PIs have signed up to are being followed (as well as looking at whether those processes meet the requirements. Its a much more detailed look by people who are used to checking evidence that things are correctly run and looking for violations (or potential issues). Auditors tend to like to identify problems.

This seams really different from an ethics board or the HRA who seem to just look at the documents supplied and say they are ok. They would have no knowledge if the documents were a made up public view and something entirely different was happening behind the scenes. They also don't seem to have much expertise in that they let bad practices through without having an overall view on risks.

 

[petrichor]

I'm trying to think of things we can do that actually make a difference to the review. There's probably not much now. But, at least we can make sure that people with ME/CFS are aware of the unfounded prejudice, conflicts of interest and lack of knowledge that a substantial number of the people who will be determining the content of the new exercise review bring to the task.

This is something to be kept in mind. Although I appreciate that cochrane is actually making some sort of effort on this review to allow the representation of patients and more unbiased/people with different views on this review. I don't want them to feel like there's no point in trying to do those things, and hence why I'm willing to recognise when they've made relatively good choices or done some things well. I also don't want to make any negative impression on any of the people on the author team or the IAG, especially since as I said some of them seem to have some good qualities

 

[Caroline Struthers]

This is something to be kept in mind. Although I appreciate that cochrane is actually making some sort of effort on this review to allow the representation of patients and more unbiased/people with different views on this review. I don't want them to feel like there's no point in trying to do those things, and hence why I'm willing to recognise when they've made relatively good choices or done some things well. I also don't want to make any negative impression on any of the people on the author team or the IAG, especially since as I said some of them seem to have some good qualities

But there is no point in this case. there is a great deal of point in involving patients and the public in every single review Cochrane publish. They even have a statement of principles (https://www.cochrane.org/news/statement-principles-consumer-involvement-cochrane) and a set of training tools. (https://training.cochrane.org/involving-people). The IAG is completely separate from that, and Hilda wasn't even aware of the work until I told her about it. Shows how much Cochrane really care about patient and public involvement. It is is obviously not practical to have an IAG etc. for every review. Who decides what is high profile in advance? This is only high-profile because Cochrane made a monumental hash of it the first time around. Hilda could not tell me how other "high-profile" reviews would be chosen in future to get the IAG treatment.

 

[Sean]

Additionally, clinical experience has demonstrated the presence of anger in the patient group towards staff. Clinical experience has also demonstrated the difficulties in engaging people with severe CFS/ME in rehabilitation. Our experience has indicated this is largely to do with most severe patients reporting being members of patient groups and having a negative view of the specialist teams before they come.

Most patients who use specialist services report that online information and ME groups have frightened them and many patients felt that online information from patient groups are ‘all doom and gloom’ and that Facebook Groups are all ‘very angry’ people.

Gee, I can't imagine why that would be. Real head scratcher, that one.

Besides, I'd like to see the hard evidence for these claims and adverse interpretations.

We would agree that NHS services would benefit from developing less biased information on the interventions for CFS/ME.

I look forward to this novel approach from the NHS.

 

[Nightsong]

I had similar concerns about that clinic's responses, but I don't know who wrote them.

There is a little hint on p478 that a therapist may have written, or co-authored, the Newcastle' clinic's response:

CBT is not merely a ‘supportive therapy’ – whilst as psychological therapists we hope we are ‘supportive’ – engaging in CBT therapy involves commitment and the acceptance that changing behavioural patterns and the negative view of self will reduce fatigue levels.

Nonetheless, it seems likely that Newton, as the clinic lead, would have signed off on it.

 

[rvallee]

As time has gone on and I've learnt a little bit more about some of the people on the author team and the IAG (and thought about some of the other options) I actually think they're better than I expected, and they could well be some of the best possible people that could have been chosen for this (none particularly ideological, some of them maintain interests and general skepticism about methods and the ways things are done in evidence based medicine). So I'm relatively optimistic. What they do still needs to be within the limits of the cochrane handbook and GRADE of course

I have confidence in the IAG. Precisely because it's independent, and relative to how independent it will show itself to be. Choosing Bastian is the only good decision Cochrane has made in this entire mess. But Cochrane did not put in the resources for it to succeed, and I don't trust what they will do with it, or alongside it.

But more than anything I assume that at least as much politicking is happening behind the scenes at Cochrane then there was at NICE, this time with far less visibility. Given the banishment of this review from any of the working groups, I assume this is where the real work is happening in terms of what the organization will produce.

 

[Mithriel]

Julia Newton has done some good biomedical research. Her studies looking at muscle cells and white blood cells (I think those were the cells!) in vitro showed problems with cellular metabolism. She went to Newcastle when John Richardson still ran the Newcastle Group. He was one of the last polio experts and also ME and the Royal Free epidemic.

 

[Jonathan Edwards]

Nonetheless, it seems likely that Newton, as the clinic lead, would have signed off on it.

I am not sure that one can assume that. Julia Newton may not have wanted to waste time editing something produced by therapists designed to save the jobs of therapists when she herself seems to have largely withdrawn from ME research.

Those Newcastle comments had to have come from a therapist who really understands nothing about how you extract evidence from controlled observations.

I like the point that you cannot separate the effect of the personal relationship from the therapy. Which of course means that you cannot know if the therapy works - it might be the personal relationship. You cannot have your cake and eat it I am afraid!

 

[Jonathan Edwards]

I came to the conclusion that the make up of the author group and IAG was quite appropriate.

I agree with Caroline that this re-hash review is pointless for the wider world. But I thought it might at least be a chance to bang some heads together. The NICE committee representatives came out quite surprised how much expected adversaries were prepared to agree. I suspect that the NICE process taught some people quite a lot about their own specialty. I see this Cochrane process as an internal cleansing exercise. Success will be if some people at Cochrane with dumb ideas get to realise a bit how dumb they are. There are a few people involved who will be able to point that out.

If Hilda had excluded Cochranites with woolly ideas then nobody much would have learnt anything.

I don't have great hopes for the process but I would not discount it as another important step in breaking down the sort of goldfish bowl thinking that has made Cochrane so unhelpful.