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

Yes, I am afraid that the 'politically vital' is a bit of a foot-put-in-it.

 

Well that about sums it up I suppose. Get you ready for selling ear seeds on Dragon's Den I guess.

 

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.

 

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”.

 

Hadn't thought of that - and completely true, a study like this must be a huge boon to Raelan Agle and her ilk

 

My brain is especially fuddled today, but, I don't understand why MEA have shared it on FB. It sort of comes with a health warning (they are learning), but..

 

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.

 

From the Web page there is a link for contact Sabrina Duggan.

I have submitted some concerns. The word count is limited. However, I was able to highlight multiple issues with this poor quality work.

I'll let you know if I get a response.

 

Sabrina Duggan appears to be a careers advisor with a heavy emphasis on selling yourself.

 

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.

 

Totally off-topic, but I love your username @Art Vandelay

 

She's the link on the 'advert'....

 

Trying to find anyone or a reasonable place to email or contact is baffling at Goldsmiths.

 

On this page, about half-way down, there's a name & email address for the chair of Goldsmiths' Research Ethics Committee:

https://www.gold.ac.uk/research/governance/

 

Thanks