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  1. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    But that isn't really the issue, Simon. I have highlighted certain things to make certain strategic points relating to how we can justify a concept of ME/CFS. I emphasised a relation to lying flat (not actually OI per se) because it seemed to me a bit different from the usual story and maybe...
  2. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I can understand the concerns but I have no intention of creating diagnostic criteria. I have always thought they were pretty unhelpful in rheumatology. Each patient's problems are different and managed accordingly. For research purposes it is usually best to study very typical cases and...
  3. Jonathan Edwards

    News from Cochrane

    Cochrane blasts off for a (no -return) trip to planet Zog.
  4. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Part of their policy is to allow people to publish and get peer dialogue and then publish elsewhere if they want.
  5. Jonathan Edwards

    Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

    I am a bit unclear as to what is being asked in the title. As far as I know there are virtually no illnesses that improve with exercise and certainly exercise does not make you recover from an illness. Being unfit is not an illness. Most people with ME/CFS learn not to do exercise that worsens...
  6. Jonathan Edwards

    News from the USA, United States of America

    Iwasaki is saying the right things but do we actually have significant data on T cell exhaustion, cortisol and EBV reactivation?
  7. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Thanks for the input @mariovitali. At this point I am trying to steer clear of too much mechanistic discussion so as not to bias voting but this sort of discussion will be useful when we have got a full poll. We are up to around 89 voters now. I will probably let it run another day or so to see...
  8. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I am aware that the lying flat bit and the unpredictability are not 'in the books' but to me they point to aspects that have not been that well covered by the standard accounts and so I think they are worth stressing a bit. I have now listened to about 500 people on forums describing their...
  9. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    You could look at it that way. On the other hand for a lot of other diseases we know that there is irreversible damage here or there (coronary artery blockage and heart cell death or pancreatic failure) and know pretty much nothing else about it. At least for ME/CFS we have never found any...
  10. Jonathan Edwards

    Review Towards an understanding of physical activity-induced [PEM]: Insights into microvascular alterations & immunometabolic interactions…, 2024, Haunhorst+

    I think this confuses the reduction in performance on CPET with the actual symptoms of PEM, which are too delayed to be explained by things like lactate. There may be some interesting content but the abstract looks underwhelming.
  11. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Thanks - the results look very similar to those here, which is encouraging. I am interested in the timing, but I will say more in a while.
  12. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Peer review on Qeios occurs live by you. I may have opted to give it preprint status so that I can also submit it elsewhere but usually it becomes an official peer reviewed publication as soon as three decent reviews are up.
  13. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    There is one in particular that points out the bogus nature of the numerical scale. It is hidden in a thread here somewhere. I will see if I can find it. The first author has I think a short Asian name but I may be dreaming. Edit: Have a look at the thread : Who Agrees That GRADE is (a)...
  14. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Thanks for all the input. This is interesting. I am going to leave an analysis for just a bit longer. We have 78 voters, which is impressive, but I would like to see if we can get just a few more. I can see some useful trends emerging. There seems little doubt that this is a common phenomenon...
  15. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Because it reduces reasoning based on detailed arguments to arbitrary 'numerical' grades that have no arithmetical validity as numbers and then adds them up, which in reasoning terms is garbage. If a type of trial is known to be totally unreliable because it is open to very easy abuse through...
  16. Jonathan Edwards

    Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders, 2024, Blitshteyn

    I worry that this fuels the idea that 'exercises are fine for those other 'functional' people as long as they aren't used for our patients'. There is no evidence that exercises should be recommended for anyone, I suspect.
  17. Jonathan Edwards

    Decoding the Genetic Basis of Mast Cell Hypersensitivity and Infection Risk in Hypermobile Ehlers-Danlos Syndrome, 2024, Purusha Shirvani

    Chris Ponting might feel a bit miffed that these people got an answer with 18 patients instead of 18,000.
  18. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    A dose of the bends maybe? He might even have been talking to Jessica Eccles https://x.com/BendyBrain .
  19. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    One interesting possibility is that the causation is the other way around. Maybe in LC there is persistent endothelial activation because of some after effect of the spike protein interaction with ACE-R. Maybe that makes people feel generally fatigued. And secondarily there is a reactive shift...
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