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

[MSEsperanza]

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?

I echo Trish's questions.

@Hilda Bastian I appreciate your attempts to defend PWME against demonization and also your acknowledgment of failed responsiveness to legitimate and valuable criticism.

Yet you are still unclear about what the "hot potato" is and why "community activism" is something that needs to be balanced with allgedly 'independant' activists.

What are the criteria for differentiating between the two categories?

Having a function in a patient organization? Being active on Twitter? Having "strong opinions"?

How do you tell whether people that don't make their opinions public have "strong opinions"?

Sorry for being banal, but I feel it needs to be spelled out that, most of the time, it's possible to differentiate between factual arguments and opinions, even though it's sometimes difficult.

I was in favor of Julia Newton, and very not-in-favor of some others. I was in favor of her because of what I heard about her from others.

I think a good review author is someonne who objectively assesses evidence, takes into account any risks of biases (including their own COI), uses good methodology, is responsive to criticis.

If someone is a researcher and has published a bit, the best way to judge someone's ability to do all this I think is to read their publications, not asking others about the person?

There are some discussions on Julia Newton's research papers on the forum.

Do you know that it is one of the main purposes of S4ME to rigorously discuss research, no matter if it's done by people we like as persons and advocates or not?

 

[MSEsperanza]

@Hilda Bastian , I realize you have replied to questions about some of your wordings that are unclear.

I still have difficulties, though, to understand them in another way than meaning PWME and their advocates bear joint responsibility for all ME related topics being unpopular, instead of taking into account that a network of people who have the power to influence decisions that directly -- and badly -- impact PWME's lives shaped that image of PWME:

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.

Could you spell out who you mean is" pounding at a group of people constantly"?

As the report says, though, the criterion we had ultimately reached was around "ME/CFS community activism". It's a tough situation and I wish it wasn't like this: I very much hope that this overall process is going to help move nudge towards a future when there is less mutual distrust/concern, so that relationships with ME/CFS community groups becomes the norm and not fraught.

It doesn't help me understand those wordings if you say you don't mean the term activists to be pejorative, maybe others do. It still seems that you think if others mean it to be pejorative, that's also co-caused by some PMWE and their allies.

Like you, I don't see activism as a bad thing. People can be activists or advocates and still be scientists / civil scientists, and if the siuation warrants it, keep both roles apart. E.g. S4ME forum members who are on the NICE guideline committe had to pause other/ public involvement in ME advocacy for the time being on the committee.

Still I don't see S4ME as a forum primarily dedicated to activism. I think it pretty much is what it states to be:

https://www.s4me.info/help/Values/


(Both posts took a while to write so cross-posted with the posts below Trish’s -- and still only in skimming mode so apologies if some of my points ar redundant.)

 

[Binkie4]

@MSEsperanza
I still have difficulties, though, to understand them in another way than meaning PWME and their advocates bear joint responsibility for all ME related topics being unpopular, instead of taking into account that a network of people who have the power to influence decisions that directly -- and badly -- impact PWME's lives shaped that image of PWME:

This.

The power imbalance in the shaping of the narrative around PWME has been extreme, so much so that it is often not recognised that a particular distorted and unevidenced view has been uncritically accepted. The assumptions underlying the language used, and activist is an example, should surely be part of what is studied, not used uncritically in setting up the process of the review.

 

[MSEsperanza]

E.g. S4ME forum members who are on the NICE guideline committe had to pause other/ public involvement in ME advocacy for the time being on the committee.

Just would like to add that it's both worthwhile that they pause their public involvment for a very important enterprise and a pity that their pause is taking longer than planned. I miss their comments here.

 

[Adrian]

I'll consult on the terminology "activists": obviously, as someone who themselves has a long history of activism,

I'm sure you have noticed that one of the ways those pushing GET (and CBT or other psyhological treatments) have a narative that it is only a group of activist patients who oppose them and not the vast majority and then go on to dismiss activist patients (saying they don't want to be seen to have mental health problems and so on). So when Cochrane use the word activist it is set in this context especially when they split a group of patients into activist and not activist (with no clear reason).

Language isn't about terminology but about use patterns. At best I would say the this is badly thought out by Cochrane but at worst they are taking forward and agenda defined by groups whose work is being reviewed.

I would also come back to the point of what is wanted from an advisory group. This isn't a trial being planned so its not necessary to have a diverse set of patients giving a variety of lived patient experiences which can be used to aid the trial design. This is (or should be) a very technical process so what I would argue is needed is expert patients who represent a knowledgebase within the patient community to ensure those who turn the review handle get the analysis right (which they have failed to in the past). So diversity could be pulled in terms of a mix of expertise from within the patient community in terms of understanding the methodologies and failures, the issues with measurement systems, the underlying stats (and whether particular methods are valid given the form of the data and properties of the measurement systems) as well as those who understand the interventions and the diversity of interventions labelled under GET. Whether someone is an activist or not shouldn't come into it appart from some 'activist' patients have build a huge knowledge in these areas, discussed and published analysis. For non-activists the question is what expertise are they bringing.

 

[Invisible Woman]

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!

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?

Are you aware @Hilda Bastian that ME patients repeatedly raised Freedom of Information Requests over the years for access to the data from the PACE trial?
Those FOIs were raised in accordance to the process and procedures already in place by the "system".

For years these requests were deemed "vexatious" . The fact that there were numerous, legitimate requests became twisted by certain people into a concerted campaign that they were being harrassed, even threatened and that ME patients were intimidating, threatening and scary.

This "pounding" and "activism" has been used to deny the severity of the illness and the level of disability of hundreds of thousands, if not millions of people. The establishment argument being that on the one hand patients are too sick to work but yet when it comes to arguing about treatment and theories behind that treatment they have the energy to continue to argue.

I am assuming you aren't aware of the politics and history of ME in the UK, politics and history that has heavily influenced how other nations treat ME patients. We have been caught in a Catch 22, or a witches ducking stool. Either we are as sick as we say and therefore should put up, uncomplaining with treatment that dooms us to lives of pain in darkened rooms or accept we have abnormal illness beliefs and therefore should undergo treatment that dooms us to those darkened rooms.

To make it worse QMUL airily brushed away requests and their researchers hid behind FOI officers. They even paid £250,000 to lawyers to defend themselves at a tribunal. In contrast each FOI request cost the patient who raised it dearly in terms of their health and many patients have been denied any financial support from the state because they refuse to undergo GET as it will harm them, or they've already been harmed by it only to be told they should undergo it again and support refused until they do.

This is in itself compounded by the Cochrane exercise review.

So, please excuse me if this feels like I am pounding, but I am wondering if you can be aware of this on going smear campaign against the community? Even in the PACE FOI tribunal when the matter of harrassment was raised, apart from legitimate FOI requests, the only incident was when a coffee cup got broken.

 

[Caroline Struthers]

I'm sure you have noticed that one of the ways those pushing GET (and CBT or other psyhological treatments) have a narative that it is only a group of activist patients who oppose them and not the vast majority and then go on to dismiss activist patients (saying they don't want to be seen to have mental health problems and so on). So when Cochrane use the word activist it is set in this context especially when they split a group of patients into activist and not activist (with no clear reason).

Language isn't about terminology but about use patterns. At best I would say the this is badly thought out by Cochrane but at worst they are taking forward and agenda defined by groups whose work is being reviewed.

I would also come back to the point of what is wanted from an advisory group. This isn't a trial being planned so its not necessary to have a diverse set of patients giving a variety of lived patient experiences which can be used to aid the trial design. This is (or should be) a very technical process so what I would argue is needed is expert patients who represent a knowledgebase within the patient community to ensure those who turn the review handle get the analysis right (which they have failed to in the past). So diversity could be pulled in terms of a mix of expertise from within the patient community in terms of understanding the methodologies and failures, the issues with measurement systems, the underlying stats (and whether particular methods are valid given the form of the data and properties of the measurement systems) as well as those who understand the interventions and the diversity of interventions labelled under GET. Whether someone is an activist or not shouldn't come into it appart from some 'activist' patients have build a huge knowledge in these areas, discussed and published analysis. For non-activists the question is what expertise are they bringing.

This.

 

[Hoopoe]

I can see the importance of considering political and social factors during the review even though a technical process seems like it would be an easy win for patients.

A relevant sociopolitical factor is that society doesn't want to take on the responsibility of caring for people with ME and developing proper treatments. The claims of exercise and CBT being an effective treatment are also a tool to shift the preceived responsibility away from governments and the healthcare system towards patients.

There are other factors that I and others have mentioned. All these I think contribute to an exceptionalism where treatments for ME and exercise and CBT as treatment are concerned. If the treatment in question was something like moxibustion and crystal therapy, there would be little opposition to anyone pointing out that unblinded trials are worthless.

 

[Andy]

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.

Others have explained well why the language you have used is problematic, I won't add to that.

I currently see no reason for me to continue to use my precious time and energy on this process - I shall focus my activism elsewhere and await the outcome, whatever it might be. However, if the end result is a review that supports the use of exercise for our patient population, I will most likely resume any activist activity that I feel might be useful.

 

[Adrian]

Goodness, no! I don't agree I said anything like that.

I think you did that is how I read it.

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.

Are they or is this an infinitely long process! The issues with the review have been obvious for many years and Cochrane have really dragged this process out and failed to correct flaws that are on the current review (that people are quoting and using). How many years/decades does it take for Cochrane to correct basic errors?

On the other hand, while it makes me sad, I think it's understandable that when there's a hot potato,

I don't understand why having a review with decent quality control is seen as a 'hot potato' having adaquate processes including quality control is pretty basic for an organization. Yet Cochrane has failed. Perhaps you think it is a 'hot potato' because patients have had to point out the failures of Cochrane and keep complaining and trying to drag Cochrane to do the right thing. I will say I find the way Cochrane is acting as really shocking - working in a large company I think such lack of quality control and unethical behaviour would not be tollerated.

I'm not a member of Cochrane,

But in taking this role you are effectively representing Cochrane and are a communication conjuit for them.

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.

Lets be clear about this when people like Sharpe and White talk about the bad behaviour of the few they are talking about those who analyze their work and publish papers on it (Sharpe on the radio said the only place for critisim is peer review prior to publication) the people doing the FoIs to get truthful information about what is happening in trials and they are the MPs asking questions in parlament.

Yet I would say one of the most effective pieces of advocay was getting the PACE data and analyzing it according to their own protocols (done by the few in terms of White and Sharpe). This really helped expose the bad science and the misleading results which started to get more notice

I would say that perhaps the slow pace of reform of the bad science pushed out by certain groups of reesearchers is perhaps due to the lack of militancy of patient activists. The approach has been evidence based and a scientific criticism. Patients haven't for example protested outside university senate meetings when they are backing the spending of public moneyto hide data. Direct action does not take place as patients are simply too ill!

I've no idea what you are suggesting would be effective advocacy but to my mind the effective things that have happened have been done (by analysing trials, getting data and publishing and deceminating issues) by those who are demonized as the few by people like White and Sharpe.

I will also point out I see some of your language going along with these views (activist/non-activist, pounding). I don't know what your intent is here but from a readers perspective with the context of what has happened to ME patients this is what I see into your statements.

 

[petrichor]

Assessing the evidence for GET is a hot potato. Not many other areas have the combination of very strong pressure from both sides - if you say GET doesn't have good evidence you'll be painted as bowing to the pressures of activists, as has been done to NICE after its draft review, and even to cochrane already when it temporarily withdrew its GET review. And if you say it does have good evidence, you'll be criticized, possibly also in a fairly public fashion, for turning a blind eye to poor research methods and bowing to the pressure of influential people in medicine.

I assume cochrane is under a fair bit of pressure from multiple sides, and that's probably shaping its behavior to some extent, and it's understandable why people wouldn't necessarily be jumping out of their seats to get involved with this review. It's also pretty plausible, given how common disdain towards ME and people with ME is in the medical profession, that there's some prejudice that underlies it, but I don't think you can really deny it's a hot potato.

 

[Trish]

It's also pretty plausible, given how common disdain towards ME and people with ME is in the medical profession, that there's some prejudice that underlies it, but I don't think you can really deny it's a hot potato.

I agree it has ended up as a hot potato. But the blame for that lies squarely with one side - the people who did poor quality research, twisted the results to fit their political agenda and personal disdain for pwME, spent public money trying to withhold data from proper scrutiny, and demonised those who pointed out the faults. We need to be completely clear that we are the victims here. I think victim blaming is despicable. That Cochrane should join in that victim blaming is shameful.

 

[Robert 1973]

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.

I very much hope that @Hilda Bastian will answer this question.

I would recommend reading this blog on "The Death Threat Myth Exposed" by Jennie Spotila: https://www.thefacultylounge.org/20...n-dispelling-a-damaging-rumor-about-mecf.html

It ends with the following message from Dr Whittemore to Jennie:

I am truly sorry for the hurt and harm I have caused the ME/CFS community by raising the issue of death threats in my comments during the NIH telebriefing. Since the telebriefing, I have heard from several individuals with ME/CFS who have expressed to me how hurtful my comments were. That was certainly not my intent and I sincerely apologize for making those remarks. I was wrong to have said those things.

 

[Robert 1973]

For non-activists the question is what expertise are they bringing.

Indeed. We don’t want a repeat of what happened with PACE, where AfME’s ill-informed involvement was exploited by the trial authors and their supporters to make it look as though it had the support of “non-activist” ME patients.

 

[Sly Saint]

Its more like patients needing to hit their head against a wall to be listened to.

possibly the most frequently used emoji on the forum.

Are you aware @Hilda Bastian that ME patients repeatedly raised Freedom of Information Requests over the years for access to the data from the PACE trial?

The last response to one of these FOIs was that the data could not be supplied because Peter Denton White had retired and there was no one else at QMUL who could extract the data......
miraculously this data has been retrievable many times over in the past year by PDW and associates to produce yet more papers on CBT/GET.

 

[FMMM1]

Cochrane has been told to be "iconoclastic" by important funder NIHR - not sure it has achieved that in any shape or form.

The establishment being "iconoclastic" a concept that raises some questions!

 

[Hutan]

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.

I'm not entirely sure that Hilda actually said that Cochrane are reluctant to update the review, but it certainly isn't unreasonable to think it, or to say it. We have pages and pages of threads on this forum that set out how Cochrane has been reluctant to update its ME/CFS reviews.

People have had their illness worsen, parents have unknowingly encouraged their children into treatments that have damaged them, people's mental well-being has suffered when they have not been able to exercise their way out of the illness and have faced the stigma created by the BPS proponents, families have withdrawn support in order to encourage their sick loved one to 'pull themselves together', and some people have given up on life altogether - all while we have waited and advocated for Cochrane to apply decent science to the question of exercise as a treatment for ME/CFS.

It's been a long couple of days with this and other things on, and I'm getting tired and pretty demoralised. To me, it is completely unreasonable that there is not a single expert patient on the writing team. It's not that there are no good candidates, there are plenty. That there are none on the writing team is Cochrane's prejudice made explicit.

I hope that Hilda may reflect and see that, for a balance that is not yet there, and to adequately inform the review, there must be an expert patient advocate on the writing team. And that she will take steps to make the composition more credible, and more respectful of the work people with ME/CFS have done to improve the level of science applied to ME/CFS.

 

[Jonathan Edwards]

I am beginning to think that the rift in which the hot potato lies is less to do with threats to the BPS crowd and more to do with a threat to the Cochrane community itself. There has been mention of difficulty in persuading people that exercise might not be good for everything. The people who need persuading there are Cochrane people I think, not PACE people.

Moreover, the critique of PACE has exposed bad practices that it becomes clear that people within Cochrane prefer to turn a blind eye to - the nonsense of GRADE and RoB2, the problem of blinding, the idea that therapist-delivered treatments managed in primary care are somehow immune to the harms of drugs.

The Cochrane community like to see themselves as professionals working in tandem with customer amateurs. The reality is that the customers are the professionals here - in the sense of rigorous use of methodology. It is the Cochrane community that has been amateur. When Cochrane founder members (more than one) come out with the claim that sometimes you can just tell that a treatment works, from clinical experience, it becomes clear that they really don't understand the basics. It would be nice to educate them but they need to eat a bit of humble pie first.

 

[Jonathan Edwards]

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.

Yes, Hilda made the point that even bad trials can be worth reviewing if they show things like harms or in this case refute a theory.

But maybe it is an indication of the toothless nature of Cochrane that as a rule it does not seem to venture into such negative territory. Are there many reviews that rather than just saying not enough evidence say that the evidence makes it clear that this treatment should not be used? Perhaps there are for toxic treatments for cancer or treatments for diabetes with bad risk/benefit ratios. But I doubt many come up with the idea that a hypothesis is refuted! And in terms of harms the exercise studies are as useless methodologically as they are for efficacy.

 

[Trish]

I am beginning to think that the rift in which the hot potato lies is less to do with threats to the BPS crowd and more to do with a threat to the Cochrane community itself. There has been mention of difficulty in persuading people that exercise might not be good for everything. The people who need persuading there are Cochrane people I think, not PACE people.
[...]

I think Jonathan Edwards makes a very good point. This is about Cochrane defending itself against the exposure of the fact that it's reviewing process is broken. That it allows the inclusion of trials based on unblinded trials with subjective outcomes, wrongly defined patient groups, meaningless 'measures' of fatigue, outcome switching etc. to be used as a basis for treatment recommendations is a sign that their review process is seriously flawed. If that is exposed through this case, then a whole lot of other reviews will be shown to be fatally flawed too, along with the body that enabled this to happen.

There is also the threat to the whole swathes of lucrative 'exercise based rehabilitation' and 'psychosomatic medicine' and 'IAPT for MUS' clinics that hang at least in part on maintaining the fiction that trials like those reviewed here show anything useful about the efficacy or safety of treatments purveyed in those clinics. There are a lot of careers and incomes on the line.