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

[Andy]

Pounding at a group of people constantly has negative consequences.

Please could you confirm that I understand correctly that, here on an ME patient forum, you have negatively described our communities efforts to highlight the flaws in the current Cochrane review of exercise for CFS as "pounding", and used this as a reason why Cochrane, as an organisation, are reluctant to take responsibility for updating this review.

 

[Adrian]

And I don't think it's puzzling. Pounding at a group of people constantly has negative consequences.

I find this comment really offensive. You are blaiming a group of patients who are basically pointing out bad science for pointing out bad science and saying that is why no one wants to help. Yet there is a narative that has been created and permuated through the medical community started by some of those bad scientits attacking patients and saying they are horible and violent. An example recently came with the CDC where this story had remained for many years yet there was no evidence beyond a rumour started by a non-existant scientist.

The medical profession really needs to start growing up and acting like adults rather than spoilt children who go attack and go off in a strop when they receive criticisim.

'pounding' happens because patients have spent years pointing out the most basic problems and no one taking them seriously and dismissing them. Its more like patients needing to hit their head against a wall to be listened to. Look at what Cochrane did with criticism where they failed to address serious points and failed to follow their protocol. Patients should be thanked for doing that not accused of 'pounding'.

I will say in the area I work in we pay people who break systems and find flaws (sometimes quite big bounties) as that helps up qualities and reduce the likelihood of attacks. Compare to the medical profession where ranks are shut and critics dismissed and ostrisized.

 

[Adrian]

Please could you confirm that I understand correctly that, here on an ME patient forum, you have negatively described our communities efforts to highlight the flaws in the current Cochrane review of exercise for CFS as "pounding", and used this as a reason why Cochrane, as an organisation, are reluctant to take responsibility for updating this review.

Maybe that is why @Hilda Bastian hasn't prioritized this process and even quite a simple thing has taken well over a year whilst a dangerous review stays up.

 

[Robert 1973]

But I can't help thinking that the only sensible answer to the problem of the useless exercise review was to admit that there is no evidence worth reviewing because none of the trials are adequately controlled and leave it at that.

Except, as you noted in your evidence to the Scottish Parliament: “these trials generally tell us nothing useful. However, the PACE trial at least may tell us more – that the theory behind the treatment is actually wrong.” If Cochrane were to come to the same conclusion, that would be useful.

@Hilda Bastian Can Jonathan’s evidence to the Scottish Parliament be added to your list of documents?

NICE have reviewed all the evidence for GET, CBT, etc and found it is of low or very low quality, so it can't be used to make recommendations. So why do we have to go through it all again with the Cochrane process? I know it's a different process, but why is it any better?

Should the NICE document which grades all the outcomes from exercise studies be added to the list of documents too (https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7)?

 

[Hilda Bastian]

It feels like it really is about politics rather than Cochrane doing the right thing or even taking patients seriously. Their dismissal of patient critics of bad science as 'activists' is a key point in demonstrating they don't want to take patients seriously.

I would have thought it was a an exercise designed to cover themselves but if they really wanted to cover their backs they would have withdrawn the current review as it could be harmful and is so obviously nonsensical. I suspect it is more they want to be seen to be taking criticism seriously whilst still trying to control processes and the agenda with no concern for the quality of output. Its taken over a year to get to this point but a quick look at the material would have said its not up to a sufficient standard to make it worth doing a review (basically what NICE did).

I'll consult on the terminology "activists": obviously, as someone who themselves has a long history of activism, I don't consider it a negative term. And I've saw no sign that any of the people involved in this discussion see it that way - and there is great concern for the quality of the review. Indeed, had they had the views described here, there wouldn't be an activist in the author group at all.

Wanting to ensure that the scientific work is not just of high quality, but also widely agreed to be of high quality, isn't a negative in my view.

If they wanted to control the process, the advisory group wouldn't be an independent one, I wouldn't have been given this role, I couldn't have chosen the advisory group's members, I'd have had no involvement in the editorial arrangements or the author team. Communication would be handled by the Cochrane communications team, with me needing permission to do something as at high risk for criticism as participating in this Forum (and in a truly controlled situation, a request like that would no doubt no denied - I'm going here by my experience of having had requests in other organizations in other contexts denied).

If everybody agreed on that view of the evidence, it would be a very different situation. But they don't. If they did, multiple versions of NICE reviews, the AHRQ review, and the CDC one, wouldn't have come to different conclusions about evidence that was included in each of them.

 

[Caroline Struthers]

Remember when you were criticizing the plans for the review to be authored by staff? That's where I came in: the composition of the review team is clearly very different.

On Cochrane's side, the new editorial group had to be negotiated. That took time. Then the respective roles and responsibilities of the different arms of this were negotiated - it's a completely new arrangement, and it was important to enter into this with enough clarity to enable everyone to concentrate on the critical tasks and avoid conflicts, duplication, and things being overlooked because someone assumed someone else would be doing it.

That process included negotiating the role of the IAG in the review: usually, there's just rounds with editors and peer reviewers. It included things like my proposal for a public discussion of the protocol post-peer review and before a final editorial round for publication.

The pandemic affected everything - even down to making recruitment harder. And the task of analyzing the history of critiques took longer than anticipated.


It's a different process.

Lf course I'm very familiar with the view that reviewers who know nothing about a topic are the ones best placed to review it, I don't share that view, and I've always opposed it. You complained about Cochrane's original plan to do just that, if you remember. Consider, too, the current opinions being expressed on this Forum about a review done by the CDC on that basis.

I don't believe anyone could come to this review with no opinion about exercise, even if they had never before heard of ME/CFS, and I think people's beliefs about exercise have been a key part of the problem with this issue from the beginning. And even when you start on a review process with no prior strong opinions, you develop opinions very quickly.

I never wanted the review to be done at all! Still don't. I have now asked twice why Cochrane using a different process to do the same job that NICE have just done for all interventions for just one intervention is going to add useful knowledge that we don't already know. Why is the Cochrane process better? If the Cochrane process explicitly fed back to funders of any poorly designed studies of exercise that might possibly be identified to inform them that public money had been wasted, that would be quite useful I guess.

 

[Hilda Bastian]

I think that brief already shows a high degree of tone policing from Cochrane - the use of the word activist is implicitly trying to devalue and that is what has happened over many years. Why for example, not use the phrase expert patients. As soon as someone gets involved in a patient community and says something negative around psychosomatic research they are labelled as an 'activist' in a way to discredit. So it is interesting that Cochrane had this initial briefing and what it suggests around their underlying thinking about patients (and their views on patients having and expressing opinions about research).

It's not tone policing from Cochrane. I don't see activist as a pejorative term - I have described myself as an activist, for many years primarily as an activist, and done so with pride. I see what you mean, though, so I'll consult about a better way to describe this, and I welcome suggestions (and I've just added your language of "patient community" to a working list). I agree that the language matters, it always does, and there should be a way to describe the situation that at least lessens these concerns, and doesn't tap into the language that people in this complex terrain use to be derogatory about each other.

 

[Robert 1973]

Wanting to ensure that the scientific work is not just of high quality, but also widely agreed to be of high quality, isn't a negative in my view.

I think it’s clear that most of those with vested interests in promoting CBT/GET as safe and effective treatments are unlikely to agree with criticisms of PACE methodology etc. The best we can hope for is agreement between independent scientists who understand trial methodology (like Jonathan) and expert patients. (The £600 Jonathan and I offered in 2018 to any mainstream independent scientist who is willing to defend PACE as “good quality” science remains unclaimed.)

Also, please can my BMJ rapid response on harms of GET be added to the document list (https://www.bmj.com/content/371/bmj.m4356/rr-0)?

 

[Invisible Woman]

I'll consult on the terminology "activists": obviously, as someone who themselves has a long history of activism, I don't consider it a negative term. And I've saw no sign that any of the people involved in this discussion see it that way - and there is great concern for the quality of the review. Indeed, had they had the views described here, there wouldn't be an activist in the author group at all.

I appreciate activism from your perspective is not a negative nor pejorative term @Hilda Bastian & why should it be?

However in our world the term has been used to smear & silence us. The label "activists" has had the effect of making it acceptable to ignore our views as unreasonable , demanding & uneducated. Reports of threats made by ME activists were used, without proof given, to paint the ME community as mentally unstable, in denial as to the cause and treatment of our condition and so forth.

Patients who spoke out, reasonably and politely, about harms caused by treatments and the poor quality of research were dismissed as militant ME activists and accused of putting researchers off working in the field.

In their defence at the PACE tribunal, one of the witnesses speaking on behalf of QMUL likened ME patients (who requested data through proper FOI channels) to animal rights activists and, if memory serves, the type of climate change activists who used to threaten violence and damage property.

All the more insulting because those very "activists" are barely able to get themselves to the loo or brush their teeth. In fact one such "activist", Alem whose FOI request was successful, has been so very severely ill ever since is still, to the best of my knowledge, entirely bedbound and dependent on care from family. So the term activist can seem.....taunting.

I'm not saying this to embarrass, or claim your perspective of activism is any less valid than ours. I am saying it to demonstrate that your perspective and the perspective of someone who hasn't been involved in the community is very different.

This lack of understanding and knowledge highlights to me many of the concerns raised by others. It isn't necessary or even expected that every member of the IAG will have that background perspective and expertise in both the problems of research into ME and how that influences the daily lives of patients but we, the patient community, do need to be confident that at least some of them do.

 

[Hilda Bastian]

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

Looking at this I was shocked. In the role of the IAG it seems to be slipped in that the idea of the review is to revise the current protocol which is clearly not fit for purpose. It relies on unblinded trials with subjective outcomes, inconsistent interventions and dodgy measurement scales (which do not support the stats done). I had thought that when Cochrane said they would have a new review that this would be a genuine new review with a rethink of the protocol - not a rehash of what is there with a few minor improvements. @Hilda Bastian can you comment on that?

Thanks for pointing that out - I'll get it updated next week. That was the original wording, and as the report makes clear, there is going to be a new protocol now. Originally, I'd thought a sensible way to start was with pointing out problems in the original protocol: but assembling and working on a distillation of all the problems people had already pointed out was a better way to go, I think (and that's what we've done).

I'm not sure what you mean about Cochrane saying they would have a new review: I've only ever seen them talk about an update.

 

[Sean]

It's not a matter of selecting 'reasonable' people from all sides in order to find some sort of compromise.

The one thing this review cannot become is a political compromise.

This is all about methodology, nothing else. Get that right and the rest will follow. Get it wrong, and we stay stuck in this cesspit.

I will say in the area I work in we pay people who break systems and find flaws (sometimes quite big bounties) as that helps up qualities and reduce the likelihood of attacks. Compare to the medical profession where ranks are shut and critics dismissed and ostrisized.

Yep. Medicine seems to have not learned that if you want to find out where the flaws are in your claim/hypothesis/whatever, then let your critics have at it, and take them seriously. They will find the flaws. Your allies and fellow travelers will not be so motivated.

 

[Hilda Bastian]

I also would like to share my thoughts on the new announcements.

First of all: I appreciate Hilda Bastian’s efforts to set this up and lead the independent advisory group as it probably a difficult position to be in. I think involving ME/CFS stakeholders and clinicians is a good idea that will genuinely help to make the review on exercise therapy better. I’m also glad to see some well-known advocates involved. I would like to thank them for contributing their time and energy to what is likely going to be a long and difficult process.

Thanks! (I won't respond to everything here, especially where I've commented on the issue.)

That said, the involvement of ME/CFS stakeholders has never been the main issue.

I take your point. However, there has also been lots of public criticism of how Cochrane excluded and misinterpreted or disregarded ME/CFS stakeholders. It was a trajectory that had to change, and consumer authorship is a part of doing that decisively.

By selecting the sole ME/CFS patient on the author team based on having a “non-ME/CFS-activist background” Cochrane signals that it doesn’t take this expertise of ME/CFS patients seriously. It gives the impression that ME/CFS patients can be part of the author team to share their personal experiences with exercise but not their views about trial methodology, risk of bias assessments, and the validity of outcome measurements.

I wouldn't have proposed anyone for authorship unless I was convinced they would bring keen scrutiny to the methodological work, and both an interest and competence in understanding the critical feedback that will come about the author team's decisions. I agree it's impossible for people to assess that themselves when a person hasn't been publishing analyses and comments.

I agree that some people see consumer authors as the way you described, or as patient representatives, rather than as equal co-authors. Like many perceptions, these are ones that we're stuck with for now, but I hope will be changed over time.

I’m glad that Mary Dimmock, a parent of a ME/CFS patient, has been invited to the author team as she is a knowledgeable advocate who I highly respect. But this does not take away the concerns I spelled out above. I don’t understand why none of the ME/CFS patients - whose critical comments prompted the amendment and update of the Cochrane review - were invited to become part of the author team. One would think that this is the most obvious solution to the problem, namely the methodological flaws in the review. I doubt that anyone within the ME/CFS community would have objected if say Tom Kindlon or Mark Vink would have been invited to become part of the author team. This begs the question why Hilda Bastian didn’t consider this option or if she did, who vetoed it.

I know that would have been a popular choice in the ME/CFS community. I considered this deeply and agree they would make a great contribution. Other people would make different choices obviously, all along the way here. Based on my experience as a systematic reviewer and participating in systematic reviews with multiple people with strongly held opinions, in my opinion there were others who were surer bets to be effective at the range of aspects of this task.

I’m glad that there are a lot of competent people in the IAG but its remit remains unclear and, at the moment, it seems to be mostly advisory. Previously, knowledge patients could submit critical comments and these were dealt with by Cochrane editors and the authors of the review. That is how some of the issues with the review came to light. If the idea is now to process these comments by the IAG first, then this would create one extra intermediate step, one extra difficulty in getting one’s arguments heard by those who can correct the review.

The commenting system will still be available for the protocol and review. The IAG's role in engagement or distilling discussion points does not mean that comments will be paid less attention to than they otherwise would be. But given our role in this process - and that will be expanded on in the next report - it's essential for us to be able to audit as we go along, to make sure issues don't fall through the cracks and get due consideration: and for us to judge whether they have been addressed satisfactorily in our opinion.

Although the recent announcements certainly include positive news, it gives me the impression that Cochrane is more concerned about making everybody happy rather than getting it right. The current initiatives seem to focus more on involving representatives of the ME/CFS community in the process of writing the review rather than correcting some of the methodological flaws. What if after this whole undertaking to set up an IAG and find a representative, non-activist ME/CFS patient, the final review on GET still has some of the same methodological errors? Will knowledgeable patients have to resubmit their comments again? Will Cochrane respond: the ME/CFS community had their say, case closed?

I think inevitably the first report of a group on stakeholder engagement focused on the stakeholder engagement thus far. I think that the analysis of previous critiques of methods etc and establishing a system to ensure they are considered is a major undertaking that isn't "about making everybody happy". We will be publishing a major litany of criticisms without addressing the validity of those criticisms or the counter-arguments made to them: that is not a recipe for making everybody at Cochrane happy, for example.

I have no doubt that it's impossible for any review to be considered free of methodological error by everyone: there are disagreements about everything, and even some of the critiques from the ME/CFS community are contradictory. I'm sure there will still be comments and critiques afterwards. Our role won't be over when the review is published, although it won't be more than a few months. The commenting system doesn't get closed off for any Cochrane review. I think if there's been thorough discussion of a point, and the reasons for a different choice have been made clear, presumably pointing to that discussion would be the response. I don't believe the new editorial team would disregard and dust off new insights, but we'll certainly be advising Cochrane on this issue at the end of the process.

(Edit: I had broken the link that showed what I was responding to at the top - fixed that.)

 

[Hilda Bastian]

Please could you confirm that I understand correctly that, here on an ME patient forum, you have negatively described our communities efforts to highlight the flaws in the current Cochrane review of exercise for CFS as "pounding", and used this as a reason why Cochrane, as an organisation, are reluctant to take responsibility for updating this review.

Goodness, no! I don't agree I said anything like that. And Cochrane is obviously updating this review, so I can't imagine why on earth you'd say I said they were reluctant to update it. On the other hand, while it makes me sad, I think it's understandable that when there's a hot potato, and it's not unambiguously in one group's court, that people don't rush to grab it. That there's a group who have embraced it, and for the right reasons, is highly admirable I reckon - good on 'em!

There is no way the vast majority of people in these communities use that style of activism: there's a huge diversity in how individuals engage in activism, all along its very long spectrum of styles and tactics. But some do it, advocate it, and/or applaud when others do it. I think the ME/CFS community is subjected to extraordinarily unfair demonization because of that, as though it's everyone. And I've criticized that strongly, describing it as "a collective ad hominem attack". I'm not going to make it myself! And if I indeed believed it was characteristic of the whole community, I wouldn't be putting myself into this position. There are people who love to argue and fight, but like most people, I'm not fond of putting a giant target on myself and walking onto a battlefield when it's not even an issue I have a stake in - I don't have ME/CFS, none of my family does, I'm not a member of Cochrane, and I had nothing to do with that Cochrane review until I started to criticize it myself.

That I have opinions about effective advocacy is not news and shouldn't surprise anyone, any more than it should surprise anyone that I'm critical of the demonization of an entire community because of the behavior of a few.

 

[Hilda Bastian]

Except, as you noted in your evidence to the Scottish Parliament: “these trials generally tell us nothing useful. However, the PACE trial at least may tell us more – that the theory behind the treatment is actually wrong.” If Cochrane were to come to the same conclusion, that would be useful.

@Hilda Bastian Can Jonathan’s evidence to the Scottish Parliament be added to your list of documents?

Should the NICE document which grades all the outcomes from exercise studies be added to the list of documents too (https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7)?

Thank you! The first one doesn't mention the Cochrane review, but I'll definitely look closely to see if there are points that are not already included.

The NICE document will definitely go into the category of reviews that aren't in accord with the Cochrane review, and I and others are definitely going through it several times to see if there are new discussion points that haven't been raised before.

 

[Hilda Bastian]

I appreciate activism from your perspective is not a negative nor pejorative term @Hilda Bastian & why should it be?

However in our world the term has been used to smear & silence us. The label "activists" has had the effect of making it acceptable to ignore our views as unreasonable , demanding & uneducated. Reports of threats made by ME activists were used, without proof given, to paint the ME community as mentally unstable, in denial as to the cause and treatment of our condition and so forth.

Patients who spoke out, reasonably and politely, about harms caused by treatments and the poor quality of research were dismissed as militant ME activists and accused of putting researchers off working in the field.

In their defence at the PACE tribunal, one of the witnesses speaking on behalf of QMUL likened ME patients (who requested data through proper FOI channels) to animal rights activists and, if memory serves, the type of climate change activists who used to threaten violence and damage property.

All the more insulting because those very "activists" are barely able to get themselves to the loo or brush their teeth. In fact one such "activist", Alem whose FOI request was successful, has been so very severely ill ever since is still, to the best of my knowledge, entirely bedbound and dependent on care from family. So the term activist can seem.....taunting.

I'm not saying this to embarrass, or claim your perspective of activism is any less valid than ours. I am saying it to demonstrate that your perspective and the perspective of someone who hasn't been involved in the community is very different.

This lack of understanding and knowledge highlights to me many of the concerns raised by others. It isn't necessary or even expected that every member of the IAG will have that background perspective and expertise in both the problems of research into ME and how that influences the daily lives of patients but we, the patient community, do need to be confident that at least some of them do.

Thank you - I will be really careful about the use of the term in future in that context: I'm sorry about this.

 

[Trish]

On this point - there are many Cochrane groups dealing with chronic health problems, but they focus on parts of the body - like the gut, or hepato-biliary system, or airways - or on particular conditions that are large parts of the health and care systems and medical research, like cancers. ME/CFS may one day fit more unquestionably into one are than another, but not yet. And I don't think it's puzzling. Pounding at a group of people constantly has negative consequences. It's a situation people typically prefer to avoid, and defend against. I'm very hopeful that we can chart a more fruitful course for the future.

Please could you confirm that I understand correctly that, here on an ME patient forum, you have negatively described our communities efforts to highlight the flaws in the current Cochrane review of exercise for CFS as "pounding", and used this as a reason why Cochrane, as an organisation, are reluctant to take responsibility for updating this review.

Goodness, no! I don't agree I said anything like that. And Cochrane is obviously updating this review, so I can't imagine why on earth you'd say I said they were reluctant to update it. On the other hand, while it makes me sad, I think it's understandable that when there's a hot potato, and it's not unambiguously in one group's court, that people don't rush to grab it. That there's a group who have embraced it, and for the right reasons, is highly admirable I reckon - good on 'em!

There is no way the vast majority of people in these communities use that style of activism: there's a huge diversity in how individuals engage in activism, all along its very long spectrum of styles and tactics. But some do it, advocate it, and/or applaud when others do it. I think the ME/CFS community is subjected to extraordinarily unfair demonization because of that, as though it's everyone. And I've criticized that strongly, describing it as "a collective ad hominem attack". I'm not going to make it myself! And if I indeed believed it was characteristic of the whole community, I wouldn't be putting myself into this position. There are people who love to argue and fight, but like most people, I'm not fond of putting a giant target on myself and walking onto a battlefield when it's not even an issue I have a stake in - I don't have ME/CFS, none of my family does, I'm not a member of Cochrane, and I had nothing to do with that Cochrane review until I started to criticize it myself.

That I have opinions about effective advocacy is not news and shouldn't surprise anyone, any more than it should surprise anyone that I'm critical of the demonization of an entire community because of the behavior of a few.

Again, the blame for the subject being a 'hot potato' being placed on 'activists', not on shoddy research and refusal to withdraw a review supporting that shoddy research. The dispute was never of our making. So why the discussion of styles of activism. Why not a discussion of shoddy researchers?

 

[Hilda Bastian]

I think it’s clear that most of those with vested interests in promoting CBT/GET as safe and effective treatments are unlikely to agree with criticisms of PACE methodology etc. The best we can hope for is agreement between independent scientists who understand trial methodology (like Jonathan) and expert patients. (The £600 Jonathan and I offered in 2018 to any mainstream independent scientist who is willing to defend PACE as “good quality” science remains unclaimed.)

Also, please can my BMJ rapid response on harms of GET be added to the document list (https://www.bmj.com/content/371/bmj.m4356/rr-0)?

Thanks, Robert! I'll go through it carefully for new points and literature, and re-visit how to handle things that are not specifically about the Cochrane review.

In the meantime, just a reminder that documents that aren't specifically about the Cochrane review can be added to this open spreadsheet.

 

[Hilda Bastian]

I never wanted the review to be done at all! Still don't. I have now asked twice why Cochrane using a different process to do the same job that NICE have just done for all interventions for just one intervention is going to add useful knowledge that we don't already know. Why is the Cochrane process better? If the Cochrane process explicitly fed back to funders of any poorly designed studies of exercise that might possibly be identified to inform them that public money had been wasted, that would be quite useful I guess.

Yes, I agree it's one of the discussion points raised in the past, in a document already included.

This review is going ahead - and it won't be expanded to cover all interventions about the condition. If that were on the table, my personal advice would be not to leave this as it is for another few years: and as retraction is not being considered, that would be the effect.

There are many Cochrane reviews on topics reviewed by others, and that will continue to be the case. I think there can be advantages and disadvantages to reviews by different groups: I don't believe any one "brand" is always better. I have read the NICE review, but haven't analyzed it yet, and there isn't a protocol yet for the Cochrane review.

 

[Amw66]

I also would like to share my thoughts on the new announcements.

First of all: I appreciate Hilda Bastian’s efforts to set this up and lead the independent advisory group as it probably a difficult position to be in. I think involving ME/CFS stakeholders and clinicians is a good idea that will genuinely help to make the review on exercise therapy better. I’m also glad to see some well-known advocates involved. I would like to thank them for contributing their time and energy to what is likely going to be a long and difficult process.

That said, the involvement of ME/CFS stakeholders has never been the main issue. What happened is that Cochrane published a flawed review and that a couple of severely ill ME/CFS patients submitted detailed comments, pointing flaws and asking for these to be corrected. If I recall correctly, none of the people who submitted a detailed critique stressed that patient advocates or organizations should be involved or represented. They simply pointed out flaws and asked for these to be corrected. So the whole initiative about correct representation (someone from Australia, Europe, and the US, a patient that needs to be a woman, etc.) is very much besides the issue. It's probably a good thing and it's likely going to be helpful but it was never the core issue in my view.

I’m disappointed the sole patient in the author group was chosen based on having a “non-ME/CFS-activist background”. I find this offensive to the hard work of ME/CFS patients who pointed out flaws with exercise trials and the Cochrane. Patients’ critique of the largest exercise trial (the PACE trial) has been confirmed by multiple experts and some patients published multiple papers and commentaries on exercise therapy in the scientific literature. By selecting the sole ME/CFS patient on the author team based on having a “non-ME/CFS-activist background” Cochrane signals that it doesn’t take this expertise of ME/CFS patients seriously. It gives the impression that ME/CFS patients can be part of the author team to share their personal experiences with exercise but not their views about trial methodology, risk of bias assessments, and the validity of outcome measurements.

Because the sole patient on the author team was selected for not having published anything critical about the exercise trials and the Cochrane review, chances are high that she will not know the details of these issues yet. I would like to spell out the implications of this decision. This patient will have to learn about the problems with Chalder Fatigue Scale, the details of the PACE trial manuals and protocol, the GRADE handbook, statistical meta-analysis, ME/CFS case definitions, minimal important differences, the numerous patient surveys about GET, and so forth in a relatively short period of time. For a ME/CFS patient – who by definition has a serious reduction in the ability to function – this is a very difficult task. If this patient shares the objections raised by people in the ME/CFS community, she will have the defend them against professors in evidence-based medicine and people who do Cochrane reviews for a living. This setup doesn’t give me confidence that the issues patients have raised will be dealt with adequately. In addition, if this patient makes a mistake or misinterpretation (which is only human if one hasn’t studied these issues for a long time) this would create a false impression that the objections by ME/CFS patients aren’t well-founded.

I’m glad that Mary Dimmock, a parent of a ME/CFS patient, has been invited to the author team as she is a knowledgeable advocate who I highly respect. But this does not take away the concerns I spelled out above. I don’t understand why none of the ME/CFS patients - whose critical comments prompted the amendment and update of the Cochrane review - were invited to become part of the author team. One would think that this is the most obvious solution to the problem, namely the methodological flaws in the review. I doubt that anyone within the ME/CFS community would have objected if say Tom Kindlon or Mark Vink would have been invited to become part of the author team. This begs the question why Hilda Bastian didn’t consider this option or if she did, who vetoed it.

I’m glad that there are a lot of competent people in the IAG but its remit remains unclear and, at the moment, it seems to be mostly advisory. Previously, knowledge patients could submit critical comments and these were dealt with by Cochrane editors and the authors of the review. That is how some of the issues with the review came to light. If the idea is now to process these comments by the IAG first, then this would create one extra intermediate step, one extra difficulty in getting one’s arguments heard by those who can correct the review.

Although the recent announcements certainly include positive news, it gives me the impression that Cochrane is more concerned about making everybody happy rather than getting it right. The current initiatives seem to focus more on involving representatives of the ME/CFS community in the process of writing the review rather than correcting some of the methodological flaws. What if after this whole undertaking to set up an IAG and find a representative, non-activist ME/CFS patient, the final review on GET still has some of the same methodological errors? Will knowledgeable patients have to resubmit their comments again? Will Cochrane respond: the ME/CFS community had their say, case closed?

This.

 

[Woolie]

That I have opinions about effective advocacy is not news and shouldn't surprise anyone, any more than it should surprise anyone that I'm critical of the demonization of an entire community because of the behavior of a few.

What's this "behaviour of a few" I keep hearing about? What did these "few" actually do? I genuinely don't know, but it must be pretty damned awful. Did they try to occupy public spaces, damage property, break into researchers' offices or homes, or place researchers in fear of physical harm or for their lives? Given the limited energies of people with ME, that last one would be one pretty good confidence trick.

I certainly hope the dreadful abusive "few" does not turn out to be people who were angry on twitter or who asked angry questions at conferences or who wrote letters critiquing published articles. Or worse still, those who made FOI requests for data from various trials. Those are all to me, entirely understandable responses to the situation.