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  1. JemPD

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    Thirst, OMG thirst in a crash, cant drink enough to quench the awful thirst. It's not just a dry mouth its a kind of yearning for water a desperation for it. I have always had this yearning for water when ill, especially on the occasions of having food poisoning/gastroenteritis. Even when i was...
  2. JemPD

    British Medical Association article: Long Covid - we've been here before, 2021, J. Trueland

    I have huge respect for Charles Shepherd, but if this is really what he said & thinks (from the article) Then I must be living on a different planet, because this has not been my experience, in any regard.
  3. JemPD

    When is post viral illness PVFS and when is it ME/CFS? Discussion.

    Typo? - Do you mean PEM here? I agree with every word @Mithriel spot on
  4. JemPD

    Gastro problems and Anxiety/Stress finger pointing

    Sorry to hear your daughter is haveing a tough tim Very frustrating that they just keep saying anxiety, i think they tend to go there with any female tbh. FWIW i do get bad diarrhoea when very stressed, I had it constant for the last month, but my anxiety diarrhoea is always entirely painless...
  5. JemPD

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    So grateful to GM for the article and his social media support, but I hope someone can point out to him the pitfalls of defending us by saying it's 'real' That psych i'm sure thinks of it as being very 'real', and 'serious', o/w wouldnt be trying to section him
  6. JemPD

    Opinions requested: strugglecare

    The link in your post takes us to the 'resources' section of the site - i navigated to the home page where the site purpose & what it's all about is better described. I looked briefly at one of the video clips... i think it's probably quite good for some people, especially non neuro-typical...
  7. JemPD

    UK: Department of Work and Pensions (DWP) medical evidence

    It is my general experience that they may contact your GP for evidence if you dont send them any evidence yourself - because thats what they're supposed to do. I dont think they would be snotty about private consultant's evidence, as long as that consultant is an actual doctor - rather than an...
  8. JemPD

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    Fascinating few posts Jonathan thank you Any ideas how we might do that, it sounds very much worth doing? Perhaps MEA / AfME / MEAction would be willing to put out a call for feedback?
  9. JemPD

    The biology of coronavirus COVID-19 - including research and treatments

    That was so interesting & informative thank you. I notice they have approved the moderna vaccine in UK now, but it wont be here till spring, I'm quite worried about the lack of efficacy of AZ as so many more people will get that here Moderna becomes third Covid vaccine approved in the UK - BBC...
  10. JemPD

    Resources for help getting food during quarantine and safe handling of food

    Moved from the biology thread. Coronavirus: How safe are takeaways and supermarket deliveries? - BBC News So they are saying to leave items for '72hrs' to decontaminate.... Does anyone know if there is any actual evidence showing it dies off within 3 days.... (other than on cardboard)? The 3...
  11. JemPD

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

    You'd think GPs would have better things to do! God forbid someone should be protected or get a little extra support that this guy thinks doesnt need it!
  12. JemPD

    How to check if your N95/FFP3 mask is 'kosher'

    ETA for anyone more literal/not aware, 'kosher' is an informal way of saying genuine & legitimate Been looking into this a bit recently. So just thought i'd share what i'd found out. This doesnt mean i am 100% correct, this is just what i've read about the official markings. I'm sorry i dont...
  13. JemPD

    The biology of coronavirus COVID-19 - including research and treatments

    I agree completely, i wasnt trying to pursuade, she is very pro all vaccines so no issue there, i was explaining why i wished i would get the pfizer one (which i would have had i been 95 & 1st in the queue). I wanted to prove my reasoning because she is older generation & is suspicious of any...
  14. JemPD

    The biology of coronavirus COVID-19 - including research and treatments

    So i was attempting to explain to my carer today that the AZ vaccine had much lower efficacy than Pfizer.... she didnt believe me said 'it cant be they wouldnt have authorised it' <sigh> i said i would get proof.... i looked on your link @Snow Leopard but i couldnt make it out, sorry to be...
  15. JemPD

    Psychosomatic medicine and the psychologising of physical diseases

    'Private Eye' piece on Unum, the American insurance company, and income protection cover, 11 November 2011 | The ME Association Is Labour abolishing illness? (newstatesman.com)
  16. JemPD

    Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

    I'm so sorry that after my initial involvement & comments, my personal life blew up & i wasnt able to engage any more, & have only been able to read the general summary comments of the submission, but it looks amazing! I am massively grateful for all the long hard effort that went into this...
  17. JemPD

    Occupational therapy and ME/CFS

    Precisely @Invisible Woman For me its just not worth the risk. I have got a chair etc so it not crucial
  18. JemPD

    Occupational therapy and ME/CFS

    My fear with an unhelpful bossy OT is that if they did an unhelpful report it could have very bad consequences for PIP benefit applications. I dont know my GP that well & need letters from her as medical evidence. If the OT comes along and writes a report saying that i could do more than i can...
  19. JemPD

    Occupational therapy and ME/CFS

    My neuro, who thinks 'CFS' is 'functional' but is sympathetic, once asked me if i would like to see an OT... afeared of the 'rehab' kind that you describe i turned him down saying that after 20 yrs i'd pretty much got all the aids i need. But actually i would like some advice on aids etc, just...
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