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  1. Jonathan Edwards

    Mechanism-based therapy of non-cardiac syncope: a practical guide, 2024, Michele Brignole et al

    That looks like a SPAM journal (adverts) but I haven't read the paper.
  2. Jonathan Edwards

    Visual media for learning biology/medicine

    It's terrible.The guy knows nothing about what he is talking about and simply regurgitates the worst sort of dumbed down textbook stuff. MS is not type 4. Factors are not just genetic and environmental... Nothing to do with HHV-6 as far as I know... I presume the rest of it is as bad. This is...
  3. Jonathan Edwards

    Hypothesis Hypocortisolemic ASIA: A vaccine-and chronic infection-induced syndrome behind the origin of long COVID and ME, 2024, Ruiz-Pablos et al

    And so far, there is pretty good evidence for ME/CFS not being associated with MHC genes. The largest data set so far available showed no signal if I remember rightly. Some suggestions from the past did not hold up.
  4. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    I am sure it is. People are pushing for dedicated ME/CFS services with good intention but maybe not realising what that is likely to end up with. The new UK government has put emphasis on GPs being in charge of deciding what services there are and also on encouraging business. In the past...
  5. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    So that leaves us with the ME specialist physicians, the carers and the patients. There are a lot of very raw nerves here and many of them are best passed over. But I think a strong message needs to be sent without pulling any punches. That is that treating people on the basis of speculative...
  6. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    But the perceived charge is interesting. Spelling it out may clarify things. I think the point is that my denial of an evidence base for ME/CFS being a specific biomedical condition would provide ammunition for the psychiatrists. My perception was, and still is, the opposite. If I had made the...
  7. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Thank you for the welcome comments @Arvo. I am sorry if I have been sounding grumpy and offensive. But I feel I have my rights to be a little that way at times. I was not intending to hang out the dirty washing on the writing of this piece but maybe it will do no harm to do a bit of that...
  8. Jonathan Edwards

    Orthostatic intolerance

    Yes, I think you are confusing different sorts of terms @Yann04. PEM is not a defined process or thing. It is just the timing pattern of worsening of symptoms that is characteristic of the ME/CFS syndrome. OI tends to be fairly immediate or at least within minutes so pretty much by definition...
  9. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    I can see that @Lucibee, but I spent about four months crafting and re-crafting the document with precisely that in mind - in fact deliberately weighting all the sections to take account of seven different perspectives that I could identify as relevant - physicians in colleges, psychiatrists...
  10. Jonathan Edwards

    What would a good case study of recovery from ME/CFS look like?

    @Sasha, Do you have an example of the sort of thing you are thinking of? There is a sort of Catch22 in the way you have described this. If there is an 'intervention' that yo have 'high hopes' of then presumably someone has either proposed this intervention as a therapy or someone has a theory...
  11. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    It may be necessary to register a name and affiliation (perhaps) but reviews are welcome. A review can say whatever you like.
  12. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Doing a review is leaving a commentary - that is all there is to it. If more than three 'reviews' give a score of 3 or more I think the paper is considered 'peer-reviewed'.
  13. Jonathan Edwards

    What would a good case study of recovery from ME/CFS look like?

    I am afraid that is a trial. A trial does not have to have controls or more than 1 case. My initial rituximab trial had no controls and 5 cases. Because I had objective end-points it gave a reliable result. A trial can be done by non-medical people, including patients. The problem is if...
  14. Jonathan Edwards

    What would a good case study of recovery from ME/CFS look like?

    That's a trial again, and it needs controls and enough patients. For one person to do it would be hopeless. If they got better they would write to a journal but if they didn't they wouldn't - classic publication bias.
  15. Jonathan Edwards

    What would a good case study of recovery from ME/CFS look like?

    But that's a trial, @Trish. A case report is where you get a result without having set out to do so. If we are talking of doing a trial you need a lot more than one case.
  16. Jonathan Edwards

    What would a good case study of recovery from ME/CFS look like?

    Not a lot really. I published a case report of someone with arthritis getting better after rituximab. I had already decided to use rituximab bu the case was brought to my attention. There were no measurements before treatment - there aren't in this situation.So we just noted that the person felt...
  17. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    In practice I think that is right. But there is a crucial message hidden away behind that. In reality, the demonstration of indisputable pathophysiology (rather than structural changes that in many diseases are either hard to pin down or even not there) rests on reliable proof of the efficacy...
  18. Jonathan Edwards

    Trial Report Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise, 2024, Lee

    I fully understand your position and, as I said earlier in the week, I Amy sometimes sound a bit hard hearted or abrupt about these things but my intention is just to ensure we are not fooling ourselves about anything. My criticisms are quite often shown to be off target but I don't have the...
  19. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    I might add that I was not a member of the NICE Guideline committee. I was invited to give an expert witness report.
  20. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    That is a fairly lengthy series of editorial grouses @Lucibee but in return I can ask for your evidence - which you do not cite. It isn't there. I deliberately published this on a site where positive and negative comments are welcome from everyone (at least I guess with an academic affiliation)...
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