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

I don't have the energy to retype all this. So here's a thread about an undergraduate research internship project at Goldsmiths (University of London). Possible links to BPS researchers, Recovery Norge, etc—major red flags: https://www.gold.ac.uk/careers/work-placements-and-internships/goldsmiths-internships/grip/

Threadreader for anyone struggling to see the X posts:
https://threadreaderapp.com/thread/1798723016521564253.html

https://twitter.com/user/status/1798723016521564253

 

Disinformation is only 'politically vital' to those with certain political affiliations.

You could make an interesting film about that.

 

'You will contribute to the social scientific study of illness recovery stories posted to YouTube, developing conceptually innovative and politically vital research.'

Weird. This almost sounds like a joke.

 

This isn't just false, it's a lie. Among "medical communities" the dominant view is manifestly the psychosomatic one, and it has been for decades. The fact that that is changing is probably what inspires "research" such as this.

Anyone who thinks that you can determine "how people got better" by watching a few videos of patients and/or quacktitioners telling their stories needs to go back and revisit a few introductory scientific-method lectures.

The phrase "politically vital" is very telling indeed. To whom is it vital?

 

That youtube channel is American and seems to interview patients who have recovered from Long Covid, ME/CFS, and post-viral fatigue in both the US and the UK. In terms of common estimates for ME/CFS and Long Covid - around 250k have ME/CFS and up to 2mn have Long Covid in the UK. In the US, around 1 million have ME/CFS and up to 5-8 million have Long Covid. God knows how many have some form of post-viral fatigue. We know that a substantial proportion of people with ME recover in the first three years, a proportion that is almost certainly higher in the case of Long Covid. That youtube channel has around 300 videos. So 300 recovery stories across a patient population of potentially 11-12 million people. 300 is not only a tiny fraction of those who have LC/ME/post-viral fatigue, but also a small fraction of those who recover.

Then of course you factor in that the youtuber in question believes in a mind-body approach and goes on about brain retraining, meaning that you have a highly self-selecting sample.

So you end up with a psychologiser's dream - you get to study a population so small and self-selecting that it almost certainly validates every single thing you believe about these illnesses.

 

This is absurd. Looking up the owner of that youtube channel comes up Raelan Agle, who sells a recovery course worth 295$. In fact, it seems her entire youtube channel is an add for said course.
https://raelan-agle-s-school1.teachable.com/p/brain_retraining_101

Holy conflict of interest!

 

For people who have a goodreads account, you could leave a lesser rating on her book, given she uses it to promote her quackery. It somehow has over 4 stars.

https://www.goodreads.com/book/show/49241866

 

The information sheet for the study also makes a big deal out of honouring patients' knowledge - which is a bit hilarious when they've entirely self-selected the patients they're going to listen.

 

A formal complaint to Goldsmith's would be in order but it may be a tedious process trying to do so.

 

Raelan Agle is a well-known grifter basically, you can find plenty of people on the CFS subreddit complaining about her. I remember she promoted the Lightning Process in one of her videos. Maybe it was a paid ad for LP disguised as a normal video.

 

I have emailed a Goldsmith address but have no idea if I will get a response.

 

For future reference, I have archived the main pages of the course

Homepage: https://archive.md/Qhacm
About Me (Lesson 1): https://archive.md/jS7UF

 

We know Recovery Norge was created to get round new consumer laws relating to alternative medicine, that testimonials would no longer be lawful in advertising. The 'patient group' Recovery Norge could however tell their 'recovery stories' on public platforms. The Recovery Norge slogan is 'Listen to the patients' ..... but only the very few who claimed they recovered from ME by Lightning etc. Not the majority who did Lightning etc and did not recover. This Goldsmith project appears to be a similar vehicle for commercial interests in our illness.

Does the 'international team' include the Norwegian mind body Lightning Trainers/ promoters?

Calling ME/CFs a 'fatigue illness' opens the door very wide, as the majority of mind body 'ME cures' advertising perpetually switches between calling the illness ME and 'chronic fatigue'. Alex Howard, OHC, calls it 'ME/chronic fatigue', he says that very, very quickly, I'm sure that's a trick to confuse and conflate.. All those conflations of ME with chronic fatigue are not innocent lapses of accuracy in naming the illness. They deliberately widen the customer base to anyone who is tired, muddy the waters. It's exploitative.


The Aims and Objectives of the Research includes:

'Give patient recovery stories their due in peer reviewed academic research through publication and wider narrative dissemination.'

'Promote lessons learned from recovery in the ME/CFS clinical setting and medical community'


Huh? What recoveries in ME/CFS clinical settings? Oh, they mean promote their mind body recovery beliefs into clinical settings and to the medical community. Who do they think they are?

And what on earth are they doing encouraging undergraduates to meddle with such a serious illness as ME?

.

 

Raelan is in the states. What I assume has happened is someone has had an idea for this project and they've picked her channel because it's arguably the biggest. But major conflicts of interest. She herself has all sorts of ties to different programmes including at least a dozen brain retraining ones, and indeed her own.

 

Monica Greco at Goldsmiths is a potential project lead. She has coauthored with Sharpe on BPS topics. It could be that she's supervising this summer project.

Edit: Looks like she has moved to the University of Bath. So perhaps she's not the contact at Goldsmiths, although she's listed as a Visiting Professor there.
https://www.bath.ac.uk/profiles/head-of-department-of-social-policy-sciences-monica-greco/

 

Recovery stories on youtube especially in the context of someone like Raelan Agle are often advertising for commercial programs and the stories are crafted and selected for maximum effect. We're approaching maximum possible bias and minimum possible trustworthiness here.

If the inputs are marketing fantasies, the output will be reflect that. Either the people at the university are clueless and naive about these things or the intent is exactly to promote these therapies, preying on consumers who are clueless and naive.

Is the university not more reluctant to be associated with something like this? Do they not think that they have a reputation to defend? Maybe the next project will be about how to scam the elderly?

 

I tagged Hannah Sharland (Canary Writer) asking her if she would be interested in covering this and sent her this thread. She said she would look into it.

It seems to be getting a decent amount of engagement on twitter in general. Hopefully we can create enough noise/pushback to prevent this “study” from going through.