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  1. 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...
  2. 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.
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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...
  8. 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...
  9. 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...
  10. 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.
  11. 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...
  12. 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.
  13. 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?
  14. Jonathan Edwards

    United Kingdom: ME Association news

    He isn't the named grant holder as such.
  15. Jonathan Edwards

    The causal status of pain catastrophizing: an experimental test with healthy participants, 2005, Severeijns et al

    For participants in the control group the instructions continued: before we continue we must inform you that during the half an hour brake a psychologist closely inspected the questionnaires you completed at your arrival and this has revealed some disturbing information concerning your...
  16. Jonathan Edwards

    United Kingdom: ME Association news

    I was just as ignorant this morning. I did not realise that the UK academic neurology centre was getting heavily into ME/CFS already.
  17. Jonathan Edwards

    The causal status of pain catastrophizing: an experimental test with healthy participants, 2005, Severeijns et al

    There is a long tradition in medicine of pseudo-signs and pseudo-diseases. We have pseudo-tumours, pseudo-hermaphroditism, pseudo-cysts, pseudopregnancy, pseudohypertrophy and, most beloved of geeky students, pseudohypoparathyroidism and pseudo-pseudohypoparathyroidism. My impression is that...
  18. Jonathan Edwards

    United Kingdom: ME Association news

    You probably know as well as I do. Dr Zandi did not need any leg up. He is very well acquainted with the disease and its impact. But I am hoping he may be able to interact with the geneticists at UCL who are new to the field. One thing he talked about was attending clinics and meeting people...
  19. Jonathan Edwards

    United Kingdom: ME Association news

    No, it is a local Queen Square project as far as I know.
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