Patient perspectives of recovery from [ME/CFS]: An interpretive description study, 2023, Hasan, Busse et al

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ME/CFS Science Blog

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The information about this study was posted on this Reddit Thread where apparently MacMaster University was trying to recruit ME/CFS patients.

Here's how the McMasterCFS account represented itself and the study:

"Our team is made up of Dr. Meredith Vanstone who is a Scientist who studies complex, ambiguous, and marginalized topics in medicine, health, and psychology. Drs. Busse and Zeraatkar are physicisns who treat CFS/ME patients. We have two patient partners on our team who have CFS/ME and have experienced some degree of improvement. I am a Research Coordinator with expertise in psychology and mental health, as well as qualitative research. None of us are students. This is not a student project. This study is funded by an anonymous donor. This donor has a family member with CFS and has an interest in understanding how to treat CFS/ME from a patient perspective."​

Reddit members were skeptical, calling McMasters a "breeding ground of psychosomatics". The original post seem to have been deleted by moderators.

This seems to be the link to the survey:
https://dfmgp.mcmaster.ca/surveys/?s=8LHCYKPN3K3DCKN9

Edit: The study has been published. See post #15
 
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Patients had to fill in this questionnaire but the study consisted of a 45-60 minute online interview.

I find it a bit strange that the survey doesn't ask much questions about symptoms or medical examinations (to determine diagnostic criteria) and that they are simply recruiting patients online from anywhere in the world without any attention to selection bias.
 
Doesn't sound good. Sad if a well meaning relative was persuaded to put money into something likely to make things worse.

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FB group linking to it:
 
Merged thread

Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study

Zara Hasan BHSc, Cassandra Kuyvenhoven PhD, Mehreen Chowdhury, Lana Amoudi BHSc, Dena Zeraatkar PhD, Jason W. Busse PhD, Marina Sadik MA, Meredith Vanstone PhD

Abstract

Aims and Objectives

Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.

Method
Interpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.

Results
Twenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches.

Conclusion
Patients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.
 
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"ACKNOWLEDGEMENTS
We gratefully acknowledge the participants for sharing their stories, sometimes at great cost to their daily functioning. We thank K. Hartley and P. Garner for providing feedback on the study design, interview guide, and results based on their lived experience with ME/CFS. We also thank Recovery Norway for their recruitment assistance."

If these people are recovered, how is sharing their story a great cost to their daily functioning?

How likely is it that P. Garner is Paul Garner?
 
Of course it's Paul Garner. It seems he is dedicating his retirement to getting as much published as possible to prop up his fantasies that if only we'd all listen to people who have 'recovered' we'd all get better. Any idea of scientific evidence seems to have been expunged from his brain.
 
Among fully recovered participants, all but one attributed their success to a combination of mind-body techniques and graduated activity (e.g., guided coaching, the Lightning Process, neurocognitive training); one participant achieved full recovery through benediction by a religious figure.
Click to expand...

The ultimate mind-body technique? :rofl: At least it's less work.
 
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