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

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 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?

 

@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:

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

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.)

 

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.

 

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.

 

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.

 

This.

 

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.

 

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.

 

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.

 

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:

 

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.

 

possibly the most frequently used emoji on the forum.

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.

 

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

 

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.

 

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.