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  1. Jonathan Edwards

    Hypermobility, Autonomic and Gastro Dysfunction, and Autoimmune Markers: Clinical Assoc and Response to Intravenous Immunoglobulin Therapy, 2024

    I guess that if you run clinics for people who have been given lots of diagnoses you will find that lots of them have lots of diagnoses.
  2. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Sorry @Simon, I miss things. Are you saying that you think there are two groups of PVF (inc post-Covid): 1. Similar to more typical fatigue, delayed or non-resolution of the initial fatigue? 2. And ME/CFS or similar? I am suggesting that most post-viral fatigue may not be ME/CFS - in that it...
  3. Jonathan Edwards

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    We are talking about something right at the edge of what is considered normal in a test result that can go up more than 100 fold when it wants to. But coronary heart disease is known to be associated with this sort of borderline result for reasons that are not clear. Previous studies may have...
  4. Jonathan Edwards

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    I had forgotten that. I have always regarded a CRP of more than 2 as potentially of note. 5 is unusual in completely healthy people. If the average for ME/CFS is 2 then it suggests something going on. The problem again is whether this is ME/CFS or some associated confounder. There is a...
  5. Jonathan Edwards

    News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

    The Beentjes study picked out CRP as statistically different in the ME/CFS group but only a tiny proportion of people (?4%) had CRP levels that would be considered clinically significant normally. I think there is a high likelihood of confounding with such a tiny number.
  6. Jonathan Edwards

    United Kingdom - Suffolk and North East Essex ME/CFS services

    So what is Chales Shepherd claiming to have been achieved? Sorry, I haven't had a chance to look at the source material. Edit: I listened to Charles. I am unclear what he thinks has been achieved as yet.
  7. Jonathan Edwards

    United Kingdom - Suffolk and North East Essex ME/CFS services

    Yes but we don't want an MDT, surely. In my view we want a physician and someone with nursing training who has acquired OT skills. If other people are (occasionally) needed they can be brought in as for any patient. As soon as you have the MDT mentality you have the BACME approach.
  8. Jonathan Edwards

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    So the new WHO policy is just turning the handle on half-understood concepts of method and no application of common sense. Par for the course.
  9. Jonathan Edwards

    Medically not yet explained symptoms in hypothyroidism, 2024, Hegedüs et al.

    Yes, but endocrinologists don't know any immunology. Nor do they tend to remember the widespread connective tissue changes of hypothyroidism that are unlikely to be reversible just by correcting hormone levels - carpal tunnel narrowing, pretibial myxoedema, thyroid acropachy, and so on. These...
  10. Jonathan Edwards

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

    I would be led more in that direction if the problem was chiefly an increased hangover. Failure to metabolise alcohol might aggravate things but I don't see it being the primary cause of the unpleasant reaction.
  11. Jonathan Edwards

    Guidance for best practice for clinical trials, World Health Organisation, 2024

    Reposted here: If blinding of an allocated trial intervention is not feasible (for example in trials of different types of patient management or surgical procedures), blinded or masked outcome assessment should be pursued for objectively determined outcomes, for example through use of a...
  12. Jonathan Edwards

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

    Quite possibly. Once we have thought of all the reasons it might be wrong and not found too many!
  13. Jonathan Edwards

    United Kingdom - Suffolk and North East Essex ME/CFS services

    I have also been consulted on the Suffolk and North Essex plan. Suffolkres knows a lot about this. Last time I spoke to a person drawing up a commissioning plan there was no guarantee of physician involvement and it looked very much like just buying in BACME services as far as I could gather. I...
  14. Jonathan Edwards

    News from Cochrane

    If blinding of an allocated trial intervention is not feasible (for example in trials of different types of patient management or surgical procedures), blinded or masked outcome assessment should be pursued for objectively determined outcomes, for example through use of a prospective randomized...
  15. Jonathan Edwards

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

    Not specifically suggesting degeneration, just a change in neurotransmitter function. Degeneration seems unlikely since nobody has reported any structural change in hypothalamus.
  16. Jonathan Edwards

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

    Well it might point to the hypothalamus being crucial - and not just as part of some 'HPA axis' or 'Autonomic function'. If ME/CFS was a bit like Parkinson's disease of the hypothalamus it might make sense.
  17. Jonathan Edwards

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

    We now have over 100 votes so I shall welcome discussion of interpretation. The first thought for me is that the effect reported does not look like just an Antabuse reaction to acetaldehyde due to a metabolic failure. (That would have weighted everything to hangover.) The second is that the...
  18. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Oops. I will ask Qeios to change that.
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