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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by ME/CFS Skeptic, Oct 1, 2022.

  1. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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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
     
    Last edited by a moderator: Nov 20, 2023
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  2. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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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.
     
  3. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The Reddit thread and study were originally posted in the News About Canada Thread here.
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Doesn't sound good. Sad if a well meaning relative was persuaded to put money into something likely to make things worse.

    [​IMG]

    FB group linking to it:
     
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  5. Ariel

    Ariel Senior Member (Voting Rights)

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    They are only looking for people who have ever experienced any improvement? There is a gift card at stake!
     
  6. Charles B.

    Charles B. Senior Member (Voting Rights)

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    Sorry, could someone clarify. Is Busse a physician or a chiropractor? I was under the impression it was the latter. If the official Reddit account was representing him as a physician, and he isn’t, how is this not a major ethical breach?
     
  7. Hutan

    Hutan Moderator Staff Member

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    And since when can psychologists diagnose CFS?
     
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  8. Mij

    Mij Senior Member (Voting Rights)

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    https://cpn.mcmaster.ca/contact-us/full-bio/jason-busse
     
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  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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  10. dave30th

    dave30th Senior Member (Voting Rights)

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    So he's a chiropractor but he is referred to as a physician in the appeal for the study. In Canada, are chiropractors called physicians?
     
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  11. Lilas

    Lilas Senior Member (Voting Rights)

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    No, a chiropractor has a professional doctorate in his specialty, can be called Doctor but is not a physician. Here is a summary of Jason Busse's academic background. It seems that he is not a MD, although he holds doctorates.
    https://ca.linkedin.com/in/jason-busse
     
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  12. Lilas

    Lilas Senior Member (Voting Rights)

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    Also, I looked up his name in the CPSO (College of Physicians and Surgeons of Ontario) registry, his name is not listed.
    https://www.cpso.on.ca/en
     
  13. Mij

    Mij Senior Member (Voting Rights)

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    It appears that his 'specialty' is pain management.
     
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  14. Denise

    Denise Senior Member (Voting Rights)

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  15. Trish

    Trish Moderator Staff Member

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    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.
     
    Last edited: Nov 20, 2023
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  16. Andy

    Andy Committee Member

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    All authors, including Jason Busse, are from McMaster University, Ontario.
     
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  17. Denise

    Denise Senior Member (Voting Rights)

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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?
     
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  18. Trish

    Trish Moderator Staff Member

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    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.
     
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  19. Andy

    Andy Committee Member

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  20. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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