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  1. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    OK but I have no idea what you mean by gaslighting there. The word therefore seems useless. If we want a useful debate involving patients and healthcare workers then we need terms that are generally understood.
  2. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    I call that something like bullshitting, which I think most people do understand - saying stuff that you don't yourself believe in order to shut someone else up. Since it bears no relation to the original metaphor of gaslighting that term just seems like an empty political mantra to me.
  3. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    @Eleanor gave a very succinct account of how it isn't clear at all. In fact it is a misuse. Who needs memes or cultural touchstones, whatever they may be. We need clear language. I have never heard the term '67' other than as a number.
  4. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    But why do we need the word gaslighting for these - which are clear enough in their own right. The original example of gaslighting in the film seems to have precious little to do with any of this.
  5. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    I still find the use of the term 'gaslighting' in the context of ME/CFS too vague, polysemic and confusing to be of any use. Why not stick to plain English such as 'the doctor doesn't believe the patient'. All the stuff about having to understand the patient's reality seems to me in practice an...
  6. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    Absolutely. And it has nothing to do with 'materialism' which is a bogey invented by philosophers to justify their preference for talking about everything from a position of ignorant intuition. I am not a materialist.
  7. Jonathan Edwards

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

    I have tried very hard to point out in multiple posts that my intention is not to blame patients. James Coyne is hard to follow at times and I don't know what he was referring to. What I am saying is that it is worth appreciating that patients, carers and advocates can worsen the problem of...
  8. Jonathan Edwards

    Miscellaneous Research Thread

    Seems to be a response to an article by Knoop et al. apparently about UK POTS patients (it is the other Knoop plus Moss-Morris). It seems to be mostly an avert for Blitshteyn's claim that you can treat POTS with saline infusions.
  9. Jonathan Edwards

    Do you have any ideas for topics for PRIME seminars?

    Because a lot of people with ME/CFS have unexplained pain and also unexplained other symptoms that get called fatigue that are also unpleasant - or 'noxious' as the physiologists might call it. Pain pathways are much better understood than 'PEM pathways'.
  10. Jonathan Edwards

    Who is Simon Wessely?

    I hadn't noticed that. You are right, just like the Simpson's - "Some PACE authors and that other guy whose name we know is always redacted"
  11. Jonathan Edwards

    Do you have any ideas for topics for PRIME seminars?

    Pain genetics might be an interesting topic to cover. A range of genes have been linked both to unexplained chronic pain and to absence of pain. The range of information on their expression is impressive. Pain isn't necessarily central to ME/CFS but it might provide important clues.
  12. Jonathan Edwards

    Trial Report Ubrogepant for the treatment of migraine prodromal symptoms: an exploratory analysis from the randomized phase 3 PRODROME trial, 2025, Goadsby et al

    The incidences for side effects like nausea quoted are pretty small and don't look likely to be a problem for blinding unless you have a huge trial with very small difference in outcomes across the groups. Goadsby is an intelligent fellow who I would expect to be careful.
  13. Jonathan Edwards

    New Here - Looking for List of Bloodwork incl Cytokines

    As far as We know ME/CFS and LC do nothing to anything that can be measured on a blood test. We have at present no way of proving that there is anything wrong with the immune system. Even for diseases where we have a lot of understanding of the immune disturbances immunology blood tests on...
  14. Jonathan Edwards

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

    I don't think any physician would regard candida infections as a myth. Skin, nail and mucosal candidiasis are well recognised problems and the benefit of nystatin for some is documented in formal trials. I think Sharpe was probably suggesting that widespread undocumented claims of generalised...
  15. Jonathan Edwards

    Open Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research

    I cannot see any indication as to what will be done with collected information. If this is registered as a trial I would expect it to fall under tight privacy regulations that generally require explciti descriptions of what the data is to be used for. It looks worse than useless to me. The...
  16. Jonathan Edwards

    Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

    Lots of comments here lack critical thinking - that is not in doubt - but you bet that by the end of a week the critical thinking has pitched up and members have sorted out the wheat from the chaff. I am repeatedly criticised for not being critical enough about things and learn a huge amount. I...
  17. Jonathan Edwards

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

    I think you may be misunderstanding the discussion here. @Starrynight. Nobody is denying that people with ME/CFS have food intolerances with very unpleasant symptoms. Nobody is denying that mast cells are likely involved in that since the gut is packed with mast cells and they are reacting to...
  18. Jonathan Edwards

    Review An Overview of Severe Myalgic Encephalomyelitis, 2026, Vink & Vink-Niese

    But is this not just symptomatic of the low level of critical thinking in the field as a whole?
  19. Jonathan Edwards

    Who is Simon Wessely?

    Posts moved from: Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book) ---------------------------------------------- I recently noted that Wessely's name has been repeatedly redacted from my NICE expert witness testimony.
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