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  1. Arnie Pye

    ‘Scan-negative’ cauda equina syndrome: what to do when there is no neurosurgical cause, 2021, Hoeritzauer, Stanton, Carson & Stone

    Naturally, that has to be shoved in to every diagnosis these days. Neurologists can't find the cause so the patients must be mentally ill and making it up.
  2. Arnie Pye

    F.D.A. Approves GHB, a ‘Date Rape’ Drug, for Rare Sleeping Disorder

    I got given GHB by the NHS to sedate me for an endoscopy. Obviously the dose given would be much higher in that situation than when dealing with a sleeping issue. But based on my own experience of it I would never want to take it again.
  3. Arnie Pye

    Neuropsychobiological Fingerprints of Chronic Fatigue in Sarcoidosis, 2021, Kettenbach et al

    I have no personal interest in sarcoidosis. I don't have it nor do I know anyone who has. But whenever I see this kind of paper I always wonder if it is an early salvo in a war against treating a disease with anything other than psychiatric "remedies". In other words, before diagnosis the...
  4. Arnie Pye

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    @Amw66 From your circular diagram posted on Twitter by Jon Stone it is clear that absolutely all symptoms are to be blamed on FND now, with just a very few exceptions. The only type of symptoms that don't appear are "Got hit in the head by a javelin", or "accidentally sliced their arm off with...
  5. Arnie Pye

    The Washington Post: My hope vs. myalgic encephalomyelitis, a chronic neuroimmuno illness

    There are 6 comments at time of writing this. Two that depress me are : 1) 2) I'd never heard of interoception before, so here's a definition : Source : https://en.wikipedia.org/wiki/Interoception So, does that mean that if I learn about interoception I won't need tests or scans or...
  6. Arnie Pye

    Differentiating Functional Cognitive Disorder from Early Neurodegeneration: A Clinic-Based Study, 2021, Ball, Pennington et al

    I remember reading about an elderly man who had been a fanatical chess player throughout life, and he was extremely good at it. He seemed to be mentally alert, and still an excellent chess player well into old age. I don't know how it arose, but he had an MRI scan showing massive degeneration in...
  7. Arnie Pye

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    I'm a bit puzzled by this discussion of growth hormone levels and physical activity. According to Wiki there are many reasons for growth hormone deficiency (GHD). https://en.wikipedia.org/wiki/Growth_hormone_deficiency In research involving this would any researcher ever make sure that there...
  8. Arnie Pye

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    Is "Medically Not Yet Explained Symptoms" a new name for MUS? Functional Something Disorder? Hypochondria?
  9. Arnie Pye

    Questioning Biomedicine’s Privileging of Disease and Measurability, 2021, Kroll

    My initial reading of that sentence was: "“Probably the most replicated risk marker for a functional somatic syndrome (FSS) is that having one is strongly associated with having another twenty."
  10. Arnie Pye

    Questioning Biomedicine’s Privileging of Disease and Measurability, 2021, Kroll

    I don't know if it is because I'm female or if this is common to men as well... There have been some occasions throughout my life where I've been diagnosed with "Disease A", been investigated for the disease, and then been dismissed because no evidence for Disease A can be found. As a result of...
  11. Arnie Pye

    A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms, 2021, Gatison

    For anyone (like me) who is unfamiliar with the word "womanist" : https://en.wikipedia.org/wiki/Womanism
  12. Arnie Pye

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    This list may be of use as background info in this thread : List of autoimmune diseases from Wikipedia Note that new autoimmune diseases are discovered from time to time. And the entries on the list may be tentative and more research will be required to confirm or reject the condition as being...
  13. Arnie Pye

    Common elective orthopaedic procedures and their clinical effectiveness: umbrella review of level 1 evidence, 2021, Blom et al

    Sadly, I think the NHS in conjunction with the BPS crew and the government could find a way of denying or delaying surgery if they wanted to save money.
  14. Arnie Pye

    Common elective orthopaedic procedures and their clinical effectiveness: umbrella review of level 1 evidence, 2021, Blom et al

    Is this paper reporting on an early stage in the process of removing all these surgeries from being carried out by the NHS and forcing people to go private? I also notice that the authors are affiliated with the University of Bristol. Have I got muddled up or am I right in thinking that BPS...
  15. Arnie Pye

    Conditioned pain modulation and pain sensitivity in functional somatic disorders: The DanFunD study, 2021, Petersen, Fink et al

    How long do students put their hands in iced water for studies such as this? I'm just wondering what these researchers consider to be an accurate representation of chronic pain. Surely after a certain amount of time a hand in iced water would just go numb?
  16. Arnie Pye

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    Referring to the quote from the letter in post #24 "the CKS do not represent formal NICE guidance.” This was used against me by a GP some years ago when I was trying to get help for my hypothyroidism. He said (I'm paraphrasing because I've forgotten the exact words) that the Clinical...
  17. Arnie Pye

    BPS attempts at psychologizing Long Covid

    @Dolphin Not a nice letter. Some massive assumptions being made, all in three sentences. I couldn't actually work out which article was being replied to or whether I had access to it.
  18. Arnie Pye

    Chronic Illness Inclusion: Blog/talk on the high prevalence of energy limiting conditions and the psychological impact of not being believed

    From the report mentioned above : https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/06/CII.DHSC-Womens-Health-England-June-2021.pdf it says that women can't get adequate pain relief and are routinely disbelieved. It just occurred to me that their lives are going to get...
  19. Arnie Pye

    Vulvodynia; next target "MUS" for ACT

    Why would a group calling itself the "Vulval Pain Society" get so excited about a talk which discusses telling women their problems are all in their heads? I notice that in this link referred to in the tweet : https://onlinelibrary.wiley.com/doi/10.1002/ejp.1841 Title : The role of...
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