'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

That was a chore. The link didn't work

I've emailed Dr Pentaris

 

The advocates for ‘recovery’ seem to be saying, because some people recover everyone should be treated with GET/CBT or some variant of that. The opponents of GET/CBT variants are not saying no one recovers but the evidence we have is that currently only a small percentage recover, perhaps 6%, and we have no way of predicting who will recover and who will not. However all studies, including PACE, and all surveys indicated that GET/CBT do not produce any objective improvement and that any subjective improvement is transient, as well as perhaps 50% of those so treated deteriorate, some significantly and permanently.

There may be good grounds to look at those who seem to recover to see why they and not the vast majority of patients have been so fortunate, but their existence alone is no justification for harmful or unevidenced interventions. Some humans have been to the moon, but that does not make it reasonable that everyone who wants to can rationally expect to visit the moon in our current circumstances.

However if the equivalent of the cost of sending someone to the moon was expended pro rata for everyone with ME on research we might then see some effective treatments developed.

Also it is not reasonable to blame people who fail to get to the moon on the grounds that they did not want to go enough or that they did not try hard enough.

 

Perhaps winning the lottery would be a better example, as entering a lottery has a real cost and the harder you try to win the greater the cost. And certainly no matter how hard you want to win and how hard you try, the odds are stacked against you.

 

Some quotes from from a post to Agle's mailing list with details of the PI:

 

I sent a very polite email earlier this week to Dr Cefai laying out my concerns with the study - that she was studying a self-selecting and tiny group of patients that was almost certain to validate everything she seems to believe about the illness based on the information sheet, meaning that any conclusions were basically meaningless and certainly couldn't be extrapolated to working out what helps people with ME writ large, which seems to be her intention. I got no response.

Like other academics and doctors who have "recovered" from ME and Long Covid through mind-body techniques, I'd imagine she is entirely uninterested in engaging with or listening to people who disagree with her. The danger of doing that is that you produce embarrassingly bad research, which is what that study surely represents.

It's also worth noting that Dr Cefai is absolutely not a scientist. She is a cultural theorist, focusing on feminist and queer theory. Now one of my very favourite academics, and someone I grew up around, was a founding figure in cultural studies - Stuart Hall. I absolutely adore his work. And some very important thinking has emerged out of critical theory. That being said, critical theory comes with a whole host of problems. Compared to a discipline like history, there is no defined methodology - you're not rooted in anything coming close to empiricism. So I'm not entirely surprised that someone coming from that background has proposed a hopelessly unscientific study.

 

I"d also be fascinated to know more about "the amazing advisory group of medical doctors and researchers who worked their butts off to bring this project to life." When I wrote the email to her, I noticed that the language she used in the information sheet was almost identical to language used by the Oslo Chronic Fatigue Consortium in this awful opinion piece: https://www.tandfonline.com/doi/full/10.1080/02813432.2023.2235609

I'd be shocked if Paul Garner and Vogt weren't somewhat involved in this. Full information sheet attached

 

Just gonna provide pictures here so people don’t have to go onto reddit to see:

 

What is Dr Cefai's role in the project? I missed that.

 

As far as I can tell, she’s leading it. She’s a lecturer at Goldsmith’s.

 

I have sent these photos to Dr Cefai. Going ahead with research that is not only so obviously flawed and biased but is also riddled with conflicts of interest is… not good. If she’s a serious and competent academic, she will change course. If she doesn’t, she’ll have her name attached to a very embarrassing piece of work.

 

I was looking through US law and the FTC specifically states that influencers have to disclose financial relationships with brands they are promoting. https://www.ftc.gov/system/files/documents/plain-language/1001a-influencer-guide-508_1.pdf
(The owner of the channel is based in the US)

Does anyone know if this influencer discloses them anywhere?
If not, would it be worthwhile to file a complaint?

 

If you endorse a product through social media, your endorsement message should make it obvious when you have a relationship (“material connection”) with the brand. A “material connection” to the brand includes a personal, family, or employment relationship or a financial relationship – such as the brand paying you or giving you free or discounted products or services.

The disclosure should be placed with the endorsement message itself.

Disclosures are likely to be missed if they appear only on an ABOUT ME or profile page, at the end of posts or videos, or anywhere that requires a person to click MORE

You can’t make up claims about a product that would require proof the advertiser doesn’t have – such as scientific proof that a product can treat a health condition.
​

https://www.ftc.gov/business-guidance/resources/disclosures-101-social-media-influencers

 

I looked it up and it seems for first offenders they get a warning. And then if they continue to not comply they can start getting large fines (upto 50k).

https://www.ftc.gov/news-events/new...bout-social-media-posts-promoting-consumption

 

Who is the influencer here - Agle or Cefai or both?

 

Agle

 

I have a family member who is a professor in broadly the same field as the lead researcher here (Sarah Cefai) and asked them if this kind of research would be seen as unethical in their field. This is what they said (also they are mostly unaware of the history of me/cfs and how patients were psychologised etc.)

That’s pretty one sided indeed. But (a) they are open about it, ie only looking at recovery stories to learn from them, which matches common practice in her field - for instance a study on lesbian life experiences doesn’t have a blind control of straight women or gay men, it isn’t epistemically justified (b) and it may correspond with her personal experience. But if (c) they don’t dig into the commercial reasons behind the videos and don’t disclose such rumored links then it is indeed unethical!​

 

c) is certainly unethical. In terms of a) - the problem is that it's not a study of recovery stories, it's a study of a highly unrepresentative and biased sample of recovery stories that she seems to believe reflects recovery stories writ large.

Also - the study spills over into a different field. It is not a work solely of cultural studies or sociology - she says that the intention is to figure out "what works" and to provide information that will be relevant to clinicians.

 

Completely agree.
Was just sharing my family member’s perspective in case useful.