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  1. Jonathan Edwards

    [Health Rising] ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3

    Probably because there are very few neuropathologists. AI says: UK Context: The British Neuropathological Society has indicated that for adequate coverage, a target of 1 full-time equivalent (FTE) neuropathologist per 1,000,000 population is recommended, which is 0.1 per 100,000. There are only...
  2. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Not necessarily. I have seen these problems play out in London decades ago. If you say to the commissioning budget-holders "I think instead of one doctor and forty therapists we she have four doctors and four nurses" you are quite likely to get in reply "We have a better idea. We like to have a...
  3. Jonathan Edwards

    [Health Rising] ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3

    A study over 10 years seems slow. Maybe there are no more cases to collect but storage and test reroducibility become major issues over that time period.
  4. Jonathan Edwards

    [Health Rising] ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3

    Except that they didn't find markers of activation. The report of disrupted microglia is odd to me - I don't know how in tissue sections you can tell that glial processes are separated from cell bodies. The author said nobody much had seen this before. I think it would be important to have...
  5. Jonathan Edwards

    United Kingdom: ME Association news

    Encephalitis lethargica was post-infective. If the immobility of very severe ME/CFS is neurologically determined there might be other commonalities, but there are major differences.
  6. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I know Luis Nacul very well. I think his brief in Canada may have required more of a positive gloss than we would like. The review of practice paper we looked at is quite cautious. Luis takes biomedical explanations seriously and has worked hard with the European ME research network. I would...
  7. Jonathan Edwards

    STIMULATE-ICP: [...] Phase III, open label, adaptive platform randomised drug trial in [LC]: [Protocol], 2023, Forshaw et al

    From what I hear there was no effect, which, if confirmed in publication, would be quite useful information.
  8. Jonathan Edwards

    [Health Rising] ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3

    It could but it begs the question why one should suggest that and exactly what would constitute this neuroinflammation. They seem very ready to assume received wisdom before challenging it. Better to assume we just didn't know?
  9. Jonathan Edwards

    United Kingdom: ME Association news

    The papers with David are about catatonia and encephalitis lethargica - biological features of brain disease that might well be relevant to ME/CFS.
  10. Jonathan Edwards

    Interventions that manipulate how patients report symptoms as a separate form of bias

    I think the point is that we have no reliable evidence for 'CBT' being any better than the man in the pub or someone who claims to have counselling skills but does not call them something fancy.
  11. Jonathan Edwards

    [Health Rising] ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3

    Or that there is no neuroinflammation. Running out of inflammatory cells does not sound plausible to me. The CRH cell finding stands out as interesting. Presumably if these cells are not working other signals are maintaining ACTH and cortisol levels.
  12. Jonathan Edwards

    Everything is in The Vagus Nerve: What is The Relationship Between Chronic Fatigue Syndrome (CFS) and Coronavirus?, 2020, Selma

    Mm. It looks as if we looked at this previously and Utsikt noted: They used Bang’s blinding index to assess blinding. I’m not very familiar with the index, but a visual inspection of the data shows what I believe is a clear skew towards guessing correctly in both groups: The effect was weak...
  13. Jonathan Edwards

    United Kingdom: ME Association news

    I can only find one PubMed entry to Zandi-M and Stevens, about using monoclonal antibodies. It would not be at all surprising if he co-authored with a psychiatrist since his main interest is autoimmune encephalitis presenting as psychosis. He expressed his dismay yesterday that there were still...
  14. Jonathan Edwards

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Sensitivity is often used to indicate a bad reaction even to trace amounts of e.g. nickel from a watchstrap or peanut proteins. It covers both classical allergy (peanuts) and other mechanisms (nickel sensitivity is not classical allergy but often get called allergy). Intolerance covers any bad...
  15. Jonathan Edwards

    UK: University College London hospitals (NHS)

    I guess that there is a EULAR guideline for fibromyalgia. It is interesting that rheumatology has decided to embrace fibromyalgia and refuse to see ME/CFS.
  16. Jonathan Edwards

    UK: University College London hospitals (NHS)

    Which it is. Mike Zandi agreed that this service is not what is needed. It used to be run by a reasonably sensible neurologist, Saul Berkowitz, but I gave a seminar to the unit a while back and it seemed rudderless. I am not sure what sort of service Saul provided but he did see people long term...
  17. Jonathan Edwards

    United Kingdom: ME Association news

    Long Covid. There seems no doubt that physicians have come to realise the reality of ME/CFS as a result of Long Covid, which, at least in shorter versions, has affected many colleagues and family members.
  18. Jonathan Edwards

    Genetics: Chromosome 20: ARFGEF2, CSE1L, STAU1

    Yes, but none of us can understand what these guys are on about. Very impressive but completely incomprehensible. ;) I think we need a formal seminar in plain Anglo Saxon to tell us what has been discovered. Edit: Was it 42 after all?
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