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  1. JellyBabyKid

    UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

    I can totally understand that, and my GPs are clearly drowning in work, but I find it frustrating that once again ME comes bottom of the pile and it's not seen as serious enough to be priority reading. With no treatment and no way of identifying who might develop it, surely more than having it...
  2. JellyBabyKid

    UK Action: Ask CCGs to buy MEA Purple Books for GP Surgeries

    I actually did this and got the ME Association to send a copy to my Practice. One GP told me he was too busy to read it and another said it was still on her desk to read...
  3. JellyBabyKid

    UK: Mentally ill 'spend months on hidden waiting list'

    This was also reported on Radio 4 Today and the NHS representative advised the these "hidden" waiting lists are published regularly and that the majority of patients recover significantly. Only one of the people from this article was included in the piece.
  4. JellyBabyKid

    BBC programme You and Yours: Are you dependent on prescribed painkillers?

    I haven't listened to this yet but I will as I find the all or nothing approach to some of these drugs frustrating. After surgery I refused to have morphine when I came home as I knew it could be addictive and didn't want to risk it. My GP has provided short term courses of Tramadol when...
  5. JellyBabyKid

    Upcoming book: CLASSIC PACING - For a better life with ME

    For those who don't do/like pacing; what management strategy - if any - do you apply? Genuinely curious as to how different people manage their condition.
  6. JellyBabyKid

    Upcoming book: CLASSIC PACING - For a better life with ME

    I've just bought a copy of this. Am having a quick skim read before a proper in depth study but so far it has a wealth of information and seems to be answering a lot of the questions I have about pacing. I should also point out it is A4 and 1/2" thick!!
  7. JellyBabyKid

    Activity baseline vs activity ceiling, why concepts and language matter

    I had it suggested to me that "finding one's edges" might be better than boom&bust. Quite like it.
  8. JellyBabyKid

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    What report is this please? And why is MS worried about it?
  9. JellyBabyKid

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    This is excellent ; please can you send it to the guardian editor and strongly suggest that they publish it?!
  10. JellyBabyKid

    Poll: Gastrointestinal symptoms

    I had IBS before I got ME but ME made it So. Much. Worse. so I don't quite fit any of the above. However I saw a fantastic dietitian* who suggested the low FODMAP diet which has helped massively. Still have problems when I crash or my anxiety is particularly bad though, but not quite as bad as...
  11. JellyBabyKid

    UK Parliament debate - 10 Years of the Work Capability Assesment 24 April 2019

    Myself and @It's M.E. Linda have been in touch with our MP about ME since before the debate and were the source of his quote about it in this debate. 10 of the 11 people who turned up at out first ME friendship group meeting last year all reported being turned down for at least one benefit on...
  12. JellyBabyKid

    Article: The alarming hijacking of the BioPsychoSocial model

    I have been prescribed Venlafaxine and Pregabalin. I was totally unable to tolerate the latter and while the former helped with depression the side effects and withdrawal were *awful*. I had to take stuff for vertigo when coming off it and I was on a dose so low it wasn't considered to be...
  13. JellyBabyKid

    Article: The alarming hijacking of the BioPsychoSocial model

    Ah. right sorry. Yes - the author is making the point of being both ignored and patronised on the point in her letter to the BJGP. Good to know it's not just us patients noticing though??
  14. JellyBabyKid

    Article: The alarming hijacking of the BioPsychoSocial model

    Posts crossing as I have just posted the letter. "There is a ‘medical’ explanation for many ‘unexplained’ symptoms: medicine. However, doctors are being actively trained to disbelieve patients’ experiences3 and to assume ‘unknown aetiology’ and/or ‘psychosomatic’ causes." interesting indeed.
  15. JellyBabyKid

    Article: The alarming hijacking of the BioPsychoSocial model

    (replying to Wonko) Actually the author is arguing against this and is making the point that doctors are getting it wrong. She has also written to the BJGP (British Journal of General Practice) about it: https://bjgp.org/content/69/681/163/tab-e-letters#the-right-stuff---or-the-wrong-stuff...
  16. JellyBabyKid

    Article: The alarming hijacking of the BioPsychoSocial model

    I saw this article (which is mostly about antidepressants) on the Human Givens Institute and thought it worth sharing as it is written by a psychotherapist...
  17. JellyBabyKid

    "Answer to IBS is in the mind" - media coverage of new Chalder/Moss-Morris trial

    I have awful IBS. I did an NHS CBT for IBS course about 4 or 5 years ago. I am not sure it helped any of us on the course. I saw a dietician (privately) two years ago and started the low FODMAP diet - currently a recommended treatment for IBS - and it made an enormous difference. Can't...
  18. JellyBabyKid

    Brain throwing a party before bed - not pleasant

    Very grateful to read this as I have a sort of similar thing; it's like starting to dream before I fall asleep. I mostly get it when dozing off during the day for a brief nap. Seems to be worse earlier in the day when I haven't eaten enough. I also get intermittent tinninus.
  19. JellyBabyKid

    Possible useful link to Hacked off & the Leave campaign?

    I don't disagree but feel that it is worth a try?
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