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  1. JemPD

    BBC trust me I’m a doctor tests a placebo for back pain and sees significant results

    Indeed. I think the placebo brigade are just a section of the MUS brigade really though. Placebo is just a large part of MUS theory in reverse after all - a glorified nocebo effect if you will. Interesting that the wiki nocebo page https://en.wikipedia.org/wiki/Nocebo says "placebo & nocebo can...
  2. JemPD

    Blog: The PACE trial - a complaint.

    A great blog post, but i do wish people would stop with the factual error of stating that the NICE guideline was based on the results of the PACE trial. It was not. It might be pedantic when it was based on the same treatments from the same authors, but NICE came out in 2007, PACE not till 4yrs...
  3. JemPD

    UK CMRC 2018 Conference Rachel French

    Crikey i had no idea he'd done that & nobody had stood up & challenged him on it. What a betrayal from our charity reps. Indeed it is not, & its very telling that the Holgate's of this world think that people who know less about ME/CFS & the science around it, than your average S4ME member, are...
  4. JemPD

    UK CMRC 2018 Conference Rachel French

    I had IBS for 7 yrs before ME hit. It was/is unpleasant with very painful diarrhoea & stomach cramps. It was miserable but I lived a very full life & it rarely interfered with anything i wanted to do except for having to make sure i knew where all the toilets were & having to pretend i wasn't in...
  5. JemPD

    CDC Roundtable, Multisite Study and Dr. Klimas’ Attempt to Permanently “Reset” Chronic Fatigue Syndrome (ME/CFS)

    Absolutely. Perhaps she feels her time is better spent pushing forward rather than breaking to write papers/ get published. Not being a researcher i don't know. But actually my quality of life would be hugely improved by not having to be afraid of visiting the GP for fear of being coerced into...
  6. JemPD

    UK CMRC Conference 2018 - David Tuller

    precisely! yes Barry thats what i thought. what seems unclear is whether he is meaning a victim of patients etc, or a victim with them.... either way its spurious
  7. JemPD

    UK CMRC Conference 2018 - David Tuller

    SH's 'over the shoulder' comment made me feel really uncomfortable, it's a bit creepy & manipulative iyam. It feels like he's either perpetuating the 'harassment from patients' meme, or trying to insinuate himself as if he's been on our side all along & is a partial victim alongside us, when in...
  8. JemPD

    UK CMRC Conference 2018 - David Tuller

    @dave30th you make me so happy every time you speak. I just start smiling at the sound of your voice, and it's the same when I start reading anything you've written. You and your work are an absolute tonic & I am just so so glad you're on our side. I actually get a lump in my throat sometimes...
  9. JemPD

    Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

    This is truly excellent. I not managed to read all of it yet but impressed with what i've seen. Many thanks to Vink & Vink-Niese
  10. JemPD

    Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

    @Mark Vink you might like to read the very warm reception to this paper on this thread :) https://www.s4me.info/threads/graded-exercise-therapy-for-me-cfs-is-not-effective-and-unsafe-re-analysis-of-a-cochrane-review-2018-health-psychology-vink.6097/
  11. JemPD

    Article on ME/CFS in GQ magazine

    actually no, good point. perhaps the thread would be better deleted but i dont know how to do that.
  12. JemPD

    UK: Shared GP appointments trialled - and patients 'like' them

    it'll be lovely wont it. 15 people in a room - 4 with mild ME/CFS, 10 with CF all chatting together & 1 with moderate end of severe ME almost collapsing off their chair with the effort of holding themselves upright & the sensory overload of people talking.... "I find yoga helps me" "you just...
  13. JemPD

    Article on ME/CFS in GQ magazine

    yes i actually didn't notice that. I thought i'd clicked on all the links, but actually It also links to an article about 'attitude' on the rehabilitation link. There is a totally inappropriate & frustrating TATT link too. I obviously didn't check the links very thoroughly the first time around...
  14. JemPD

    UK CMRC 2018 Conference - Prof Stephen Holgate

    Indeed. It all reminds me of an episode of 'Yes Minister'. Somebody will be appointed to a 'quango' soon :rolleyes: :bored: :banghead:
  15. JemPD

    Article on ME/CFS in GQ magazine

    https://www.gq-magazine.co.uk/article/chronic-fatigue-syndrome-everything-you-need-to-know Not too bad i thought. Of course not perfect but I thought it pretty reasonable in comparison to many media articles. At least it's tone is reasonably respectful/sympathetic to the sufferer. Edited to...
  16. JemPD

    Henrik Vogt: IOM review panel biased by patient influence

    :jawdrop::laugh::laugh::laugh::laugh::rofl::rofl::rofl::rofl::rofl: Oh that did make me laugh @Jonathan Edwards, i needed that tonight, thank you:D But HV's tweet itself is comical too, it's absurd - can he not hear himself, he's doing a Sharpe, unwittingly tweeting things about himself/his...
  17. JemPD

    The ME Association's continued support of the Sussex ME Society

    I'm a bit fed up wth the MEA over their social media policy too - not issuing warnings etc (as in my post above) But, while i think they have a blind spot over this particular issue, it's my overall impression that CS works very hard indeed fighting our corner, with the likes of the DWP, NICE...
  18. JemPD

    The effects of warm water immersion on blood pressure, heart rate and heart rate variability in people with CFS, 2018, Parker et al

    Sometimes a hot bath makes me feel significantly better, sometimes much worse. It does help with pain while i'm in there, oh god it feels so good! and afterwards for about 30-60mins i do find it all around quite 'reviving' even if it exhausts me. What i mean by that is even if it uses up what...
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