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  1. ME/CFS Science Blog

    Central sensitization: a matter of concern

    This doesn't sound good: "Association between child maltreatment and central sensitivity syndromes: a systematic review protocol." https://www.ncbi.nlm.nih.gov/pubmed/30782933 CFS is included in the planned review
  2. ME/CFS Science Blog

    Cost-effectiveness of interventions for medically unexplained symptoms: A systematic review, 2018, Wortman et al

    No, unfortunately, I can no change it. But thanks for spotting it anyway. You seem to have a good eye for spelling mistakes.
  3. ME/CFS Science Blog

    A general thread on the PACE trial!

    Thank you Lucibee, you're the best. Will try to put the PACE documents on a MEpedia page, if that's ok. That seems to be the easiest way for newcomers to search for information. I suppose all these documents are public since they are either published by QMUL, the PACE-authors or obtained...
  4. ME/CFS Science Blog

    A general thread on the PACE trial!

    Can someone help me find some PACE- documents? I 'm looking for (1) the Q&A that used to be on the QMUL website and (2) the reanalysis the PACe authors published at the time the data was being released. Many thanks in advance,
  5. ME/CFS Science Blog

    Blog: "Even the Ethics Committee says the PACE authors should share the patient-level data, so why does PLOS ONE not enforce its regulations...

    Thanks, Barry. I usually open pdf's in chrome instead of adobe reader and think that might've got something to do with it. When I opened it with Adobe and downloaded/accepted the Flash content, all went fine.
  6. ME/CFS Science Blog

    Blog: "Even the Ethics Committee says the PACE authors should share the patient-level data, so why does PLOS ONE not enforce its regulations...

    I can't seem to open pdf-file. Anyone else has this problem or a way to fix it? Many thanks in advance
  7. ME/CFS Science Blog

    Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?(2019) - G.Morris,Maes,Berk,Puri

    Michael Maes is a psychiatrist from Belgium. I think he was one of the pioneers of the inflammation theory in depression. In the years 2000, he started studying CFS with pretty much the same idea in mind: that researchers focus too much on behavioral aspects and too little on biological elements...
  8. ME/CFS Science Blog

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    Thanks for your feedback Richard. I agree with Jonathan Edwards that being a patient is not a conflict of interest (which interest would be conflicting with what?). I should say that I left out this section of my submission Because BMJ asked about this information before submitting. In one of...
  9. ME/CFS Science Blog

    News from Belgium

    Forgot to mention: one of the Belgian ME/CFS patient organizations (Wake Up Call Beweging) has published a detailed analysis of this report's findings. It can be read here (hope google translate helps): https://www.me-gids.net/files/documents/AnalyseEindverslagMDC-CVS.pdf
  10. ME/CFS Science Blog

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    Here's the letter I submitted to the BMJ which didn't get accepted. It simply lists some of the main arguments which you all know and which have already been made on this forum and elsewhere. I'm a bit curious about the reason it wasn't accepted. At one point I thought it could be because I...
  11. ME/CFS Science Blog

    My Label and Me: I’m not tired and lazy, I have ME

    This is from James Wilson's blog:
  12. ME/CFS Science Blog

    My Label and Me: I’m not tired and lazy, I have ME

    Well, if graded exercise helped him he's allowed to tell his story of course. The CFS diagnosis is very heterogeneous and post-exertional malaise is not a required symptom, so it's possible that some people with the CFS-label find GET to be helpful. This corresponds with the data in patient...
  13. ME/CFS Science Blog

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    That would be great thank you. But I still haven't received confirmation that my submission was rejected. I find it a bit weird that it hasn't been accepted because the BMJ rapid response section used to publish practically every response as far as i can tell. Are there others who've...
  14. ME/CFS Science Blog

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Well, it's always possible to find a reason why the test you failed was unfair. That's not difficult to do. But the fact that the PACE-authors were allowed to set up the conditions of the experiment (Oxford criteria, Chalder fatigue scale etc.) and were given exceptional resources to do so (5...
  15. ME/CFS Science Blog

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Testing a theoretical model isn't easy. But I guess one tests a hypothesis by looking at predictions of that hypothesis that are testable. The psychosomatic model proposed by White/Sharpe/Wessely/Chalder says disability in ME/CFS is due to deconditioning and false illness beliefs such as...
  16. ME/CFS Science Blog

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    I don't see the contradiction. Not having a control condition makes it easier for GET/CBT to obtain statistically significant effects, because of the extra care and therapist contact, the patient receives. Despite that advantage and despite other favorable circumstances (such as using the...
  17. ME/CFS Science Blog

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    CBT/GET can be effective while the underlying hypothesis is wrong. But if GET/CBT turn out to be ineffective that discredits the model the PACE-researchers have devoted their careers to. If day doesn't follow night, then your hypothesis about the blackbird is wrong. So in a way this was a test...
  18. ME/CFS Science Blog

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    The PACE authors' hypothesis was that GET and CBT would outperform SMC and APT. The authors had published about GET and CBT, researched its effectiveness in RCT's and promoted their use as effective treatments for ME/CFS before starting with the PACE-trial. None of the authors had published...
  19. ME/CFS Science Blog

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Welcome to the forum @Diane O'Leary Thanks for sharing your interesting story and for responding to our comments. I apologize that my reply is a bit long. I) In your paper you argue that there is a “substantial possibility” that ME/CFS patients suffer biological harms “and this possibility is...
  20. ME/CFS Science Blog

    Pacing - definitions and sources of information

    The main proponents of pacing are Ellen Goudsmit and Leonard Jason. They have written a consensus document together, sketching what pacing means and how it differs from GET. It's open access...
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