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  1. Jonathan Edwards

    Can small fiber neuropathy present like ME/CFS?

    Certain causes of neuropathy are quite well understood, yes. Although generally not small fibre specific. B12 goes for dorsal columns. Diabetes hits all nerve types I think. Vincristine neuropathy has a specific pattern etc. The small fibre neuropathy said to be associated with fibromyalgia or...
  2. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    No. At least in the UK I'm pretty sure that obtaining consent from a ten year old in this context is not legally valid. I think there are very real concerns about that. Even with a pseudonym cases like this may be recognisable by schoolfriends' families and others later in life.
  3. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I am not assuming any diagnosis here, or even that we think we have the diagnostic categories right. I am simply saying that from the little information we are given ME/CFS looks the most usual problem to present like this. And I don't see on what grounds the authors say it is wrong - there...
  4. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    There is nothing we know about ME/CFS that says not. Children do recover. How fast that can be I don't know but 6 months does not seem that quick. And we aren't really in a position to say what is possible since we don't understand ME/CFS at all. That would not be so unusual for a mother and...
  5. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I think it is unlikely that a child would become withdrawn, underweight and sensitive to stimuli from eating too many supplements. It sounds from the story that very likely 'Mara' had ME/CFS. The authors claim that she did not fit the diagnosis but they describe her as if she has it. If she...
  6. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I have so far just looked at the abstract but my thought is that this cannot be Munchausen by proxy - at least as defined by Wikipedia. MBP involves a parent manipulating evidence or depriving a child care to make a healthy child appear sick. It seems that the child here was sick.
  7. Jonathan Edwards

    Epigenetic regulation of CD38/CD48 by KDM6A mediates NK cell response in multiple myeloma Liu 2024

    Yes, it is only relevant to malignant cells that lose CD38 by mutating and thereby become 'invisible'.
  8. Jonathan Edwards

    Can small fiber neuropathy present like ME/CFS?

    I think there may be a problem with using skin biopsies for diagnosing SFN. As I understand it the number of small nerve fibres is counted. Whether it is really possible together a reliable number out or not I don't know. I would expect the method to be very open to subjective bias. I would...
  9. Jonathan Edwards

    Dysautonomia

    That is probably about all we have. If there is no sign of something like an adrenaline secreting tumour or a dangerous heart rhythm then waiting and hoping may be the best plan. Obviously I cannot say anything specific about anyone's particular case but very often in this situation more...
  10. Jonathan Edwards

    Dysautonomia

    I think the problem is that for the tests we have it is not clear what to make of the answers and nobody knows what other tests to think up. An awful lot has to be known in order to be able to use a test to reliably explain a pattern of symptoms. It is not so much that nobody is bothered but...
  11. Jonathan Edwards

    Dysautonomia

    Yes, but that could mean any number of things. It is also not clear whether it means that the fault is in the autonomic system itself or something else that regulates it. To me this is too vague a term to be of any clinical use.
  12. Jonathan Edwards

    Rapamune / Rapamycin/ mTOR

    I agree with @Hutan that this is a potentially valid way of doing a study. But there is a potential problem that they will not know whether the treatment made one group better or the other group worse - quite apart from safety in terms of other unwanted effects. If the trial generated a...
  13. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Something that I don't actually know, despite having been a co-author of a Cochrane Review, is whether or not Cochrane Reviews actually cost Cochrane anything to get done. I don't remember my senior author getting funding from Cochrane but she may have done. My impression was that people...
  14. Jonathan Edwards

    Dysautonomia

    As a physician I am not at all sure what 'dysautonomia' is supposed to mean. I mostly hear the word being used by colleagues whose scientific understanding I doubt. Traditionally, it has been associated with rare syndromes where there is generalised failure of autonomic nerves but that does not...
  15. Jonathan Edwards

    Exertional Exhaustion [PEM] Evaluated by the Effects of Exercise on [CSF] Metabolomics–Lipidomics and Serine Pathway in [ME/CFS], 2025, Baraniuk

    I am not sure I understand what was being looked for here and why. CSF might give an indication of what brain might have been doing but the samples were taken before and after physical exercise with arms and legs I presume.
  16. Jonathan Edwards

    Mind and Body in the Guardian again

    Well, as Hutan points out there is huge scope for harm - and since the amount of harm is unknown it is completely unethical to behave that way in routine practice without getting some reliable trial data. The longer I life the more sure I am that psychological approaches cause massive...
  17. Jonathan Edwards

    Mind and Body in the Guardian again

    Another Guardian piece, this time on shortage of physiotherapists for children. Maybe some are badly needed but maybe someone needs to check whether the treatment does anything useful...
  18. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Sorry David, I posted a tidied up version of the letter without the title by pasting from Word. The title is “Advocates of the intervention launched a full-on bid to try to stop the project. “ which gives you the meaning of the bit in parenthesis.
  19. Jonathan Edwards

    Mind and Body in the Guardian again

    So when does hardware become firmware or software? Looking back at the old BBC-B computers with software chips it is all rather unclear. Neural circuits can be trained but I am not sure there is evidence they can be de-trained. You just overwrite some further training. There are instances of...
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