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

For the record, here's what it says on the website:
https://www.gold.ac.uk/careers/work-placements-and-internships/goldsmiths-internships/grip/
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GRIP: Research internships

Develop your research skills and your CV over the summer.

GRIP is a programme that gives undergraduates six weeks full-time experience working on an academic research project during the summer between their second and final year.

Opportunities are available in a range of departments and you’ll have the chance to work alongside academic staff on innovative projects that really contribute to Goldsmiths research.

When and where
The programme runs from the beginning of June to the end of July and working hours are 20 per week. Some start and finish dates may vary. Check the individual opportunity for details.

Internships take place using a hybrid working model for flexibility, meaning you can work both remotely and on campus.

Payment
Payment is via a bursary of £1578 for six weeks, paid in two instalments at the end of June and the end of July.

2024 Applications are now open
You can apply for up to two internships. See below for an overview of the projects.

s.duggan (@gold.ac.uk).

This is followed by 6 projects of which this is one:


Recovery is possible: Lessons in 'ME/CFS' recovery from YouTube.

Join an interdisciplinary team on a participant-led project enquiring into the mediatisation of ‘chronic fatigue’ in digital culture.

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

You will gain first-hand experience of research design, reviewing literature, data production and analysis using quantitative and qualitative methods, and working with an international team with clinical, community, academic and entrepreneurial experience in the areas of health, medicine and wellness.

This is a unique opportunity to study the world through the lenses of media cultures, philosophies of embodiment, and medicine.

Apply through CareerSPACE
 
One slightly positive take-home message from this ridiculous research project - it's the second study I've seen on recovered patients, the other being a published paper consisting of interviews with recovered patients, which was also from a BPS standpoint. Figures like Michael Sharpe have long argued that recovered patients should be included in the research agenda, a case that's been made much more vociferously by Paul Garner. However, both of these studies show that it's actually quite difficult to study fully recovered patients with any kind of rigor. In both cases, you had researchers essentially handpicking patients, resulting in studies that can only be taken seriously by, frankly, zealots.

An actual study of recovered patients would require quite a lot of resources. You'd need to do something like - take a large population of ME/CFS or Long Covid patients, track them over time, and get recovered patients from that broader sample. But that would probably take years and you'd need a very large population in the first place because not that many people completely recover. And when after all that time you get to study that recovered proportion, how the hell do you figure out why they recovered? Interviews are fraught with issues and bias - and people are, as we've found with Paul Garner and others, often not very good self-historians. I know people who'd say they recovered due x or y method, but in reality their recovery coincided with them actually starting to pace. Which is why randomised control trials exist.

So essentially - the BPS cabal could spend quite a lot of effort trying to study this population, but get absolutely nowhere and produce research that is hilariously easy to dismiss and rebut.
 
RaviHVJ said:
resulting in studies that can only be taken seriously by, frankly, zealots.
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I think the more serious issue for these studies, is less that they will sway the academic literature, but more that grifters can use them to add a layer of legitimacy. The average patient who isn’t too scientifically minded will see a link to pubmed and think “wow that looks serious and sciency — must be true then”.
 
Yann04 said:
I think the more serious issue for these studies, is less that they will sway the academic literature, but more that grifters can use them to add a layer of legitimacy. The average patient who isn’t too scientifically minded will see a link to pubmed and think “wow that looks serious and sciency — must be true then”.
Click to expand...

Hadn't thought of that - and completely true, a study like this must be a huge boon to Raelan Agle and her ilk
 
Yann04 said:
I think the more serious issue for these studies, is less that they will sway the academic literature, but more that grifters can use them to add a layer of legitimacy. The average patient who isn’t too scientifically minded will see a link to pubmed and think “wow that looks serious and sciency — must be true then”.
Click to expand...
Definitely. There may also be another reason: in the UK, there have previously been adverse Advertising Standards judgements against various forms of quackery, such as these against the LP. If the proponents of these pseudo-therapies can get a few different papers into the literature then they may have a greater chance of getting their claims past various countries' regulators.
 
This is impressively unserious. What's next? Researching the satisfied clients of psychics and how they fell in love with a ghost?

The inevitable end of this ideology is to get even more openly grifting and clownish. I assume we'll see plenty more of that, but it's not as if this is especially less ridiculous than the FINE trial or SMILE.
 
Yann04 said:
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!
Click to expand...

Not only that, according to this post: "she makes money by charging £250 to people wanting to sell their "coaching programmes""



The fact that her many of her videos are paid promotions makes this study look like an even bigger load of nonsense.
 
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