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I've just learnt of a new project/study at Goldsmiths (University of London), which I have concerns about.
The project is called 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube'. 1/n
gold.ac.uk/careers/work-p…
I've just learnt of a new project/study at Goldsmiths (University of London), which I have concerns about.
The project is called 'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube'. 1/n
gold.ac.uk/careers/work-p…
The above screenshot/link is the only information I can find online about the project, and it is not clear who is running this study.
However, I've seen a further document about the project, attached here:
However, I've seen a further document about the project, attached here:
In summary, the project will analyse recovery stories on a popular YouTube recovery channel (@ RaelanAgle) to see 'what works for recovery'.
Now, some people do recover, and we should obtain data on what seems to help. However, I have major concerns about this project.
Now, some people do recover, and we should obtain data on what seems to help. However, I have major concerns about this project.
First, I've followed Raelan's channel for around three years. The channel has grown considerably. I've watched dozens of her videos.
Whilst I've found some of the stories relatable/helpful, the channel is full of pseudoscience—brain retraining, Lightning Process, parasite...
Whilst I've found some of the stories relatable/helpful, the channel is full of pseudoscience—brain retraining, Lightning Process, parasite...
...cleanses, detox, Internal Family Systems (?)—you name it, it's there. Many of the people featured are now themselves practitioners of whichever approach they are espousing.
In addition, the recovery stories include people with diagnoses such as fibromyalgia, 'toxic mold',...
In addition, the recovery stories include people with diagnoses such as fibromyalgia, 'toxic mold',...
...Lyme disease, and 'chronic fatigue', long covid—not just ME/CFS.
The diagnosis is almost irrelevant, because Raelan conflates different illnesses and adopts an 'illness-without-disease' approach; it's all reversible nervous system dysfunction.....
The diagnosis is almost irrelevant, because Raelan conflates different illnesses and adopts an 'illness-without-disease' approach; it's all reversible nervous system dysfunction.....
....which is basically the biopsychosocial (BPS) approach to ME/CFS, and indeed why I assume this Goldsmith's study will use her channel.
There's no way you can say anything meaningful about recovery rates from these videos, but that seems to be one of the aims of this project.
There's no way you can say anything meaningful about recovery rates from these videos, but that seems to be one of the aims of this project.
You can see just from the biased tone of the Information Sheet that they are looking for data that supports their BPS beliefs; they conflate ME/CFS with 'fatigue illnesses' and clearly believe that the low recovery rates are far too depressing and must be wrong! Because YouTube!
Even for a small narrative-based social sciences study, this is laughable. They certainly can't say anything even remotely scientific about what works for recovery and whether the recovery rate is actually higher. It's nothing but annecdote.
@davidtuller1 @s4me_info
@davidtuller1 @s4me_info
@davidtuller1 @s4me_info I would like to know who is running this study and who the 'international team' is.
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