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

RaviHVJ said:
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.
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I have been pondering my comparison of this study to the lottery. Undoubtedly it would be methodologically identical to look at how to solve individuals’ debt problems by selectively interviewing lottery winners, and then recommending buying lottery tickets when in debt as 100% of people winning over £500,000 pay off all their debts.
 
poetinsf said:
I suppose this video calling ME/CFS a spiritual disease is one of the paid interviews? I have no problem with recovery stories, but peddling this kind of quackery for money is seriously immoral.
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Wow! Those so called therapists are in the grip of some serious and rather narcissistic delusions about our disease, and about us. They seem to have some kind of 'saviour complex' (yeah, well, anyone can do the jargon cos jargon is cheap)
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How much harm has this meddling woman caused with her unevidenced and fantastical beliefs about ME and the people who have it - Jenny Lynn, the therapist interviewed in this video on Raelan Agle's Youtube Channel. She perpetually conflates ME/CFS with 'chronic fatigue'. They always do, it gives them a much bigger client base:


'THIS is What REALLY Causes Chronic Fatigue Syndrome: A Therapist's Insights (Jenny Lynn)'



Training, qualifications & experience



    • 20 years in private practice specialising in Chronic Fatigue Syndrome
    • Training of colleagues in treatment of Chronic Fatigue with Integrative hypno/psychotherapy.
    • 5 years in voluntary clinic at local GP's surgery
    • Have run a number of personal development courses in assertiveness and confidence building, self hypnosis, and a range of other courses
    • Given public talks to GP's, Social Workers, Charities, and Practice Nurses on a range of mental health and personal development subjects
    • Fellow of the National Council of Psychotherapists
    • Member of Hypnotherapy Association
    • General Hypnotherapy (Reg)
    • 3 years integrative psychotherapy and hypnotherapy training with SACH - School of Analytical and Cognitive Hypnotherapy
    • SQHP - Senior qualification in hypnotherapy practice awarded by the General Hypnotherapy Standards Council (GHSC)
    • I have a degree in modern languages and was a Former Secondary School teacher, Further Education lecturer, and Business Languages tutor for Liverpool University.
https://www.hypnotherapy-directory.org.uk/member_12134.html




I can't read/watch/listen/ to much of this stuff before feeling like I am food to these people, and there are so many of them.
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Some thoughts on the “stated goals” of the study as said in the information sheet
(each bullet point in italic is a stated goal — and the indented paragraph is my thoght)

• ⁠Offer a critical appraisal of the validity of the "5%" recovery rate whose basis in research lacks sufficient rigour from a social and cultural perspective.
How the hell is taking a cherry picked sample of 150 people who have recovered from an illness that affects tens of millions supposed to tell anything about that 5% stat. I could just aswell have analysed interviews of everyone who’se walked on the moon and said that it means that there are probably more people who walked on the moon than initially thought.​

• Offer an account of "what works" according to the steps taken by people who have recovered.
Her study offers an account of “what works” according to stories promoted and crafted by companies trying to sell products​

• Give patient recovery stories their due in peer reviewed academic research through publication and wider narrative dissemination
This is a terrible way of doing this due to the point above. Even sharing a registration form online asking for people who have recovered from ME/CFS would have provided a much less biased cohort (and that cohort would still be extremely biased). The only way to properly do this is to take a group of people with ME/CFS and revisit that group in x amount of time and speak to those who recovered​

• Promote lessons learned from recovery in the ME/CFS clinical setting and medical
community
This is extremely worrying because the “lessons learned” are cherry picked for profit advertisments of buisnesses. I think the word fraudulent is adequate here.​
 
Also — would anyone be interested in helping me file a FCC complaint against the influencer.

I can write up parts and draw up some evidence — but I’m too severe to be able to watch videos, so I unfortunately cant link to the relevant videos.

Edit: I mean FTC
 
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Peter Trewhitt said:
I have been pondering my comparison of this study to the lottery. Undoubtedly it would be methodologically identical to look at how to solve individuals’ debt problems by selectively interviewing lottery winners, and then recommending buying lottery tickets when in debt as 100% of people winning over £500,000 pay off all their debts.
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survivorship_bias.png
 
Do we have any update on this?

If ethics was any concern the study would have been discontinued after @RaviHVJ ’s email. But I’m imagining it wasn’t?
 
Jonathan Edwards said:
What they are open about is that the study is seen by them as a political imperative. In other words not looking and learning but finding illustrations of an already crystallised campaign message. That to me is not ethical if dressed up as an academic study.
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It’s propaganda, pure and simple.
 
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