Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by John Mac, May 14, 2025.

  1. Utsikt

    Utsikt Senior Member (Voting Rights)

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    You’re not! They went beyond the evidence, as usual..
     
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  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I agree with your analysis.

    Though the evidence for ME/CFS being psychogenic is laughable, and further I believe on the balance of probability it is more likely to be a biomedical condition, until we have a clearer understanding of the aetiology the current associated physiological abnormalities are correlations, which, as we have to continuously point out to the BPS lobby, is not alone proof of causation.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree, I would not have signed this. I think it is a pity that one or two people who should be pushing a rigorous science approach have done so. It misinforms patients as well as being a weak counterargument.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh that hits the spot. Really like the dig to Wessely, and I'd even link to his text.
     
    Last edited: May 22, 2025
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  5. V.R.T.

    V.R.T. Senior Member (Voting Rights)

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    Thank you. Concerned about linking to Wessely directly as I haven't included other references. May just leave as a reference for those in the know
     
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  6. JemPD

    JemPD Senior Member (Voting Rights)

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    love that, so true!
     
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  7. hinterland

    hinterland Senior Member (Voting Rights)

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    I appreciate the need for rigour but I think you’re being too sceptical here. PEM has been demonstrated as a measurable biological phenomenon in 2-day CPET in multiple studies that show day one performance could not be repeated on day two. A drop in performance at the anaerobic/ ventilatory threshold is a set biological point independent of effort or illness beliefs. In some studies patients with ME/CFS had a drop in performance at the anaerobic threshold of between 20-30% percent while normal sedentary controls were able to replicate their day one performance.
     
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  8. Yann04

    Yann04 Senior Member (Voting Rights)

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    Excellent tongue in cheek comment that will surely fly over the editors heads but make a lot of the ME community chuckle.
     
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  9. Utsikt

    Utsikt Senior Member (Voting Rights)

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    I think there are significant limitations to those findings:
    https://www.s4me.info/threads/the-biggest-2-day-exercise-study-blog-me-cfs-skeptic.40267/The biggest 2-day exercise study - Blog ME/CFS Skeptic | Science for ME
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't think se can say that a CPET measures PEM. It measures a shift in cardiorespiratory function in some cases but that is not what we mean by PEM. It might be linked but nobody really knows.

    I think we have a problem with some researchers trying to push the idea that the CPET measures PEM. It may be putting researchers off the scent and it may be misleading patients quite badly. I recently had a comment from a researcher with an interest in CPET who seemed to be more interested in validating social support and insurance claims than in scientific validity. As I see it unless we stick to actual science we are likely to end up stuck in the same dead ends that ME/CFS research has been in for a long time.
     
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  11. V.R.T.

    V.R.T. Senior Member (Voting Rights)

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    Pretty sure I submitted it but the site was glitching a bit so not 100% sure.
     
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  12. Trish

    Trish Moderator Staff Member

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  13. MBailey

    MBailey Established Member (Voting Rights)

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  14. V.R.T.

    V.R.T. Senior Member (Voting Rights)

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    Its heartening to see it in print so quickly. I doubt it will make much of an impact but it feels important to have it there. Unfortunately I left my name etc on the end of the text when I copied it over so it appears twice at the end of the article!
     
  15. poetinsf

    poetinsf Senior Member (Voting Rights)

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    "They explain that fatigue after activity doesn’t necessarily mean that this is dangerous or indicate “a lack of energy in the body.” A gradual, controlled approach to increasing activity is an important part of rehabilitation.6"

    These people have no idea what PEM is. If you have no idea what PEM is, you have no idea what ME/CFS is.
     
  16. Trish

    Trish Moderator Staff Member

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    I think it's a very impactful response. Even if only a few doctors read it, that's a few more who have been confronted with the reality of the harm caused by the BPS approach. Thank you.
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    Well done - it's a great letter, and I'm so sorry for your truly horrible experience.
     
  18. Kitty

    Kitty Senior Member (Voting Rights)

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    I agree, it's great letter @V.R.T. Thank you so much for writing it.
     
  19. JemPD

    JemPD Senior Member (Voting Rights)

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    precisely

    agree. i think it one of the best, am grateful for it
     
  20. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    @V.R.T. well done for getting your powerful rapid response in.

    I had worried that the BMJ might respond just to the external trappings of academia and reject your letter because it was not referenced, even though your informed personal account is as valid or even more valid than much of Miller et al’s content.
     

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