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  1. ME/CFS Science Blog

    ..Oxidative Stress, Exercise, and Pain in Health and Disease: Potential Role of Autonomic Regulation and Epigenetic Mechanisms, 2020, Hendrix et al

    If I understand correctly the authors argue that "although the underlying mechanisms are poorly understood, there seems to be a relation between oxidative stress, exercise, and pain." In ME/CFS and fibromyalgia there have been reports suggesting increased oxidative stress and failure of...
  2. ME/CFS Science Blog

    DecodeME - UK ME/CFS DNA study underway

    Seein the same issue: If you click on 'view profile' everything is fine again
  3. ME/CFS Science Blog

    ..Oxidative Stress, Exercise, and Pain in Health and Disease: Potential Role of Autonomic Regulation and Epigenetic Mechanisms, 2020, Hendrix et al

    But the journal and the article are registered on Pubmed, so people will find it if they search for topics or if they have an email notification for papers on ME/CFS - as I do. So not sure if one could say that the authors were conned to publish in an MDPI journal. It's probably not their first...
  4. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    I have posted the Author’s Original Manuscript (AOM) on Researchgate: (PDF) Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for chronic fatigue syndrome - author's original manuscript (AOM) (researchgate.net)...
  5. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    Thanks for this helpful suggestion. I've been reading about this and it seems that I can post the Accepted Manuscript (AM) on my personal website but not on repositories like Researchgate. On the other hand, I can post the Author’s Original Manuscript (AOM) anywhere I like. see: Publishing...
  6. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    To be honest, most of the arguments in our paper are not new, but well known within the ME/CFS patient community. Most of those who have been following the literature closely are probably well aware of these issues. It has been discussed on this forum multiple times. I thought it was worth...
  7. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    It's not open-access. But the first 50 people who use the link I provided on Twitter should be able to access the full-version for free.
  8. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    Thanks to Tom Kindlon, Simon McGrath, and Andrew Kewley for providing thoughtful comments to earlier drafts of the analysis. Also big thanks to Jonathan Edwards who has been most articulate about this argument for example in his 2017 commentary on the PACE trial or his recent testimony to the...
  9. ME/CFS Science Blog

    Bias caused by reliance on patient-reported outcome measures in non-blinded randomized trials: an in-depth look at exercise therapy for CFS, 2020,Tack

    Here's a Twitter summary: 2) Our analysis focuses on a discrepancy between several randomized trial that report graded exercise therapy (GET) for chronic fatigue syndrome (CFS) is effective and multiple surveys by patient organizations that indicate just the opposite. 3) All trials on GET...
  10. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks but our blog focuses on numbers from the US where the biomedical view has been more influential. Large agencies such as the NIH, CDC, FDA and most prominent newspaper article in the US describe ME/CFS as a serious debilitating "biological" illness. So this suggests that there is more to...
  11. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks @strategist Could you give some examples of this from influential or respected sources? I think the general BPS narrative has been a bit different: that ME/CFS is a difficult and frustrating condition, that patients deserve respect even though there doesn't seem to be a demonstrable...
  12. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks. I merely wanted to argue that the view that ME/CFS can be cured with GET/CBT (and so no further research is needed) probably isn't widespread. Regarding the narrative of GET and CBT: the data in our article about underfunding of ME/CFS research is from the US where the biopsychosocial...
  13. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks but I don't think it has ever been generally accepted that GET and CBT cure ME/CFS, despite the controversial PACE trial paper on recovery. If you read guidelines that promote GET/CBT, such as the previous NICE guideline, the general message is that GET/CBT are effective, can help etc...
  14. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    That's also an explanation that comes up a lot. I realize that many ME/CFS do not receive social benefits even if they should be entitled to given how horrible and debilitating this illness is. But in several Western European countries (UK, Belgium, the Netherlands, Italy etc.), quite a few...
  15. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks for sharing your view. This may be one of the most important reasons but I do wonder: why has so little non-biomedical research taken place on ME/CFS, for example on diagnosis, prognosis, risk factors, comorbidities, symptom reports, activity levels etc. It sometimes feels that the team...
  16. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Thanks @Invisible Woman I do think that we should make a distinction different views on ME/CFS 1) There are those who have argued that ME/CFS is a not an illness, just a new form of hysteria, a label for people unable to keep up with modern society or for women who can't keep up with their...
  17. ME/CFS Science Blog

    Why is ME/CFS getting so little research funding?

    Yes, that's possible but the same has been said about depression, ADHD, autism and these receive much more funding (per disease burden) than ME/CFS.
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