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  1. Simbindi

    Duties of a doctor

    I am starting a thread on the 'Duties of a Doctor', which in the UK has replaced the Hippocratic Oath (as far as I am aware for graduating doctors). I don't want to limit this discussion to the UK though. Here is the link to the 'Duties of a Doctor - General Medical Council' information...
  2. Simbindi

    Psychosomatic medicine and the psychologising of physical diseases

    If people want to learn more about the cognitive processing problems often seen in autistic individuals, I suggest reading the books by Olga Bogdashina:
  3. Simbindi

    Psychosomatic medicine and the psychologising of physical diseases

    I suffer from what I call 'verbal dyspraxia' but could be seen as 'stammering' to an observer, I just cannot get my tongue around common words, so this makes it hard to communicate verbally especially when I am in a stressful situation (I also have a diagnosis of general dyspraxia). However, in...
  4. Simbindi

    The use of the labels ME, CFS, ME/CFS

    When I was in hospital they said they couldn't find my daughter's telephone number in the file they had. Apparently this was a new file started at the point of the ambulance call. I asked them to bring up my GP records as I know it is on there. The nurses said they couldn't access that...
  5. Simbindi

    The use of the labels ME, CFS, ME/CFS

    They have in the past used the excuse of lack of security. Of course this is nonsense because there are secure email system providers available (that encrypt the emails for you) that they could subscribe to. Somerset Partnership did this for me when they were doing my ASD assessment and Somerset...
  6. Simbindi

    The use of the labels ME, CFS, ME/CFS

    Yes. I am going to do that. Currently they aren't even meeting their obligations under the NHS Accessible Information Standard (2016). My GP has accepted emails from me due to my autism long before the 2016 Standard came in, but still won't send me her communications electronically (I cannot use...
  7. Simbindi

    The use of the labels ME, CFS, ME/CFS

    Even if hospital discharge letters don't specify a severity level (because of the coding system), it makes no sense for my GP not to do so when making a referral for me, as this is vital for the clinician I am being referred to understand in order to be able to treat me effectively and to make...
  8. Simbindi

    The use of the labels ME, CFS, ME/CFS

    We generally refer to 'severe M.E.', yet I've never heard a doctor talk about 'severe CFS' or 'moderate CFS', they usually just refer to the illness as simply 'CFS'. I have heard the term 'mild CFS' used by medical practitioners though, I wonder what this tells us... Edit: So I told the...
  9. Simbindi

    The use of the labels ME, CFS, ME/CFS

    On my NHS hospital discharge letter last week they wrote that I had 'CFS', although I never used this term myself and was not originally diagnosed with it (in the 90's my GP used the term 'M.E.' as have some, although not all, of my subsequent GPs. So to state the term 'CFS' refers to a...
  10. Simbindi

    UK writer with ME Susanna Clarke - press articles

    I also have ADHD, so I suspect I'm very different than most PWME neurologically. I can never 'switch off' my thoughts, although they often do go round repeatedly in a loop. Even when I fall asleep I have very vivid dreams and wake up feeling mentally exhausted and usually still 'wired'. The only...
  11. Simbindi

    Enhancing the communication of functional neurological disorder diagnosis: A multi‐disciplinary education session, 2020, Edwards et al

    In the autistic self-advocacy movement this is what is termed as being 'A self-narrating zoo exhibit'....
  12. Simbindi

    UK writer with ME Susanna Clarke - press articles

    However, I was still able to make the cognitive decision to discharge myself...
  13. Simbindi

    UK writer with ME Susanna Clarke - press articles

    I actually go through stages, I internalise rather than externalise my meltdown initially. I become a sobbing mass and if left alone at that stage I need usually a couple of hours to become 'myself' again. But when I get pushed beyond this point I flip and do lash out like a wounded animal. I am...
  14. Simbindi

    UK writer with ME Susanna Clarke - press articles

    No, this is an neurological thing I can't control and not due to not being able to deal with confrontation (I'm really, really good at that in normal circumstances having worked with kids with behavioural and social difficulties and always been able to handle them, building good relationships)...
  15. Simbindi

    UK writer with ME Susanna Clarke - press articles

    I think from this and your other posts my severity level is similar to yours. What I'm interested to learn is whether when continuously pushed by others (such as in a medical environment) do PWME have anything like a full blown autistic meltdown, where they can't stop themselves lashing out at...
  16. Simbindi

    Lipomas, Dercums, Adiposa Dolorosa

    Interesting they removed one from my ex-husbands (a male's) breast on the NHS. That was about 25 years ago and definitely only done for cosmetic reasons.
  17. Simbindi

    Short fatigue questionnaire: Screening for severe fatigue, 2020, Knoop et al

    Despite Participant A stating explicitly (in the true manner of a lawyer) that she didn't suffer from fatigue they still lept referring to her illness as a fatigue/energy problem, rather than an illness that makes her feel physically sick!
  18. Simbindi

    Short fatigue questionnaire: Screening for severe fatigue, 2020, Knoop et al

    Did the researchers actually listen to what these patients were describing? Could they not work out that these patients were fed up of being gas-lighted and were responding to the inadequacies of the questionnaire?
  19. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    The article doesn't discuss the problem of the supermarket only offering a restricted range of items, compared to what is available in store. Maybe it's different in London, but for a lot of other areas this is a big issue. Neither does the article discuss the problem of half your order not...
  20. Simbindi

    UK - Resources for help getting food during quarantine and other supermarket related problems

    Unfortunately Cole and Abel don't deliver this far South! Riverford has a much more restricted product line, which is why I decided to start getting my organic milk from Milk and More, who can at least supply me with yogurt, cream, bread and individual fruit and veg items.
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