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  1. Jonathan Edwards

    There aren’t any answers, we are looking for them and will support you until we find them

    My mind threw up the phrase 'which in this case they have not got' but I became fascinated by my inability to track down its source. I remember now. It was 'Which in your case you have not got' and is part of a war poem about teaching recruits how to fire a rifle. Can anyone remember who by...
  2. Jonathan Edwards

    There aren’t any answers, we are looking for them and will support you until we find them

    I am happy to be a part of 'we' - part of a community that needs to have its struggle appreciated. The main meaning is transparent enough. I try to avoid talking of 'patients'. People with ME/CFS are, ironically, not patients because being a patient is defined by a relation of caring from a...
  3. Jonathan Edwards

    Demarcation between science and pseudoscience: Still a Problem?

    I don't see this as anything to do with demarcation. It is to do with incompetence. That's all.
  4. Jonathan Edwards

    There aren’t any answers, we are looking for them and will support you until we find them

    I would go for support rather than care, otherwise before you know it you will have an 'agreed care plan...' and off we go into the rehab jungle again. Both words make sense; I just think care is easier to subvert in the present context.
  5. Jonathan Edwards

    Demarcation between science and pseudoscience: Still a Problem?

    Pseudoscience is basically like cheating at Scrabble. If you try and get triple wrod score by spelling hyperbolic with two l's you are cheating. You might have been told that hyperbolic was spelled with two l's but most likely you are hoping nobody will notice. If you are playing Scrabble it is...
  6. Jonathan Edwards

    Shared autonomic phenotype of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2026, Novak, Systrom+

    Note that the same authors wrote a paper: Mismatch between subjective and objective dysautonomia In other words, retrospective assessment on clinical grounds is likely unreliable.
  7. Jonathan Edwards

    Shared autonomic phenotype of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2026, Novak, Systrom+

    I don't think a retrospective review like this can be taken as reliable evidence of anything, sadly. The patients studied will have been highly selected by referral routes and presenting symptoms that fit the clinic's interests. Rather than give figures for numbers claimed to have certain...
  8. Jonathan Edwards

    Demarcation between science and pseudoscience: Still a Problem?

    I wouldn't worry about things being philosophically precise. Philosophers pride themselves on being precise but are the most muddled talkers of all. They are constantly using terms out of context. There is even a branch of philosophy of language (pragmatics) championed by Charles Travis and...
  9. Jonathan Edwards

    Why are children and young people more likely to recover from ME/CFS than adults?

    Generally not. Chronic diseases with a stochastic element tend to have worse prognosis if of early onset. There are some odd patterns though. Juvenile onset pauciarticular inflammatory arthritis quite often remits by adulthood. Reiter's syndrome mostly occurs in young adults and remits. But then...
  10. Jonathan Edwards

    Demarcation between science and pseudoscience: Still a Problem?

    I don't see any problem here. I am aware of all the philosophers' ramblings but they have nothing much to do with the difference between science and pseudoscience relevant here. Pseudoscience is making claims that appear to be based on the language of science but don't actually make sense or...
  11. Jonathan Edwards

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

    The history of the diagnosis is a grand muddle. Some of the tender points are muscle, some are bony. I don't think there was any consistent conception. (And the tender points were abandoned.)
  12. Jonathan Edwards

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

    My own experience of the use of a fibromyalgia diagnosis in rheumatology is that it was generally very distinct from ME/CFS. It described chronic widespread unexplained pain. Some physicians used the term and most of them took a biopsychosocial approach despite the usual stuff of telling the...
  13. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    Seems to be stuff not published in formal journals or institutional documents.
  14. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    The first sentence of the blub says: For women, the possibility of experiencing medical gaslighting—having a health care provider dismiss or ignore their concerns without considering appropriate testing or creating a treatment plan—has always been a very real and present danger, Which seems to...
  15. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    Fine, call it manipulation if it is manipulation.
  16. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    But that is not the core of the original behaviour - which Eleanor describes very well. Persuasion is called persuasion. The sort of gaslighting you, but not some others think occurs from doctors has nothing to do with the behaviour in the film.
  17. Jonathan Edwards

    Medical gaslighting: conceptual and theoretical foundations, 2026, Noble

    No, but it was just intended as an example of what gaslighting might mean if I had any idea. If it means what you said then that's fine but why not just say what you said? Judging from hallmarkOvME's posts this is not what they mean by gaslighting - as indicated above. I don't think anyone...
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