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  1. JemPD

    Member comments wanted: Third section (What the guideline will cover) of the NICE ME/CFS guidelines draft scope

    This. And the rest of whats been said by JE in this thread re non blinding & subjective/objective measures. I could rave on about all the pernickety bits that irritate me in this scope doc. But if our response made this point CRYSTAL clear i think it would be very good. I know there is loads...
  2. JemPD

    (Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

    Eww eeww eww eww EEEWWWW! What on EARTH are the NHS doing getting 'into bed' with these people. I don't know much about the OHC but the Chrysalis thing... ugh. Just revolting.
  3. JemPD

    Kelly McLellan seeks feedback on his draft Edinburgh ME Scale

    @kmclellan Hi, I probably shouldn't have posted last night as my comment doesn't make a lot of sense, i was struggling & i probably could have worded things better. Non of what i said was intended as an insult to you personally, it wasnt meant as a 'low blow' - as i said i applaud you for...
  4. JemPD

    Michael Sharpe skewered by @JohntheJack on Twitter

    Indeed. What we want is something that is actually 'evidence based'. And when we say 'evidence' we mean high quality, scientifically sound EVIDENCE. That's why we are so "negative" about PACE.... we are simply pointing out that the evidence for what we're being given is rubbish. That is. The...
  5. JemPD

    Kelly McLellan seeks feedback on his draft Edinburgh ME Scale

    Ok so i a bit foggy so will just give first impressions... sorry they are 'whats wrong' rather than what's right, because thats just what is jumping out at ame as i spot errors easier when i not at my best. 12.5% - The thing about falling asleep, i dont sleep in the day, i wish i did. Severe...
  6. JemPD

    Joseph Stashko: How to (almost) disappear completely

    Very, very good. such a good precis of the issues
  7. JemPD

    Michael Sharpe skewered by @JohntheJack on Twitter

    Precisely. I do think it's poor for a doctor of his status, standing, influence & power over whether his patients receive such benefits, to not be aware that PIP has nothing whatsoever to do with whether someone is fit for work or not. Its about the extra financial burden of being ill/disabled &...
  8. JemPD

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Wow @Dx Revision Watch this whole situation is deeply disturbing & scary & it just stinks that a few patients/advocates - mainly yourself & Mary Dimmock as i understand it, are having to do all this massively complex, confusing & seemingly never ending work. I cant keep up with it at all, you...
  9. JemPD

    “It Has Come to My Attention…” How Institutional Complaints Procedures are Being Weaponized (article in Quillette)

    yes, https://www.s4me.info/threads/telegraph-front-page-wessely-photo-wth-duchess-of-cambridge-bps-back-pain-treatment.3124/ posts i dont think this was the first time though... i seem to remember something to do with his work with the MOD & Combat Stress charity, maybe when he got his...
  10. JemPD

    small advocacy project: replacement for CFS/ME clinic patient manual

    It might be worth doing anyway for the benefit of new patients, regardless of what happens with NICE - i dont know about that, as long as we're sure there isnt something good already in use... has the MEA pacing leaflet been looked at i seem to remember it being quite helpful? and there was also...
  11. JemPD

    Re-framing GET as pacing, or vice-versa

    @NelliePledge thanks for that link it's useful.... In the managing stress section Unless of course we're saying no to CBT or that we need to stop rather than pushing on with your shitty advice Unless its the schedule of GET you've set for us Except of course for the fact that we at the...
  12. JemPD

    Med Students Still Do Pelvic Exams on Women Under Anesthesia

    Sexual Assault. Plain and simple. They should all be in prison, every last one of them. ETA There is no difference between this & a bunch of blokes deciding to do it to some woman passed out drunk. In fact it's worse because these woman have put their trust in these doctors.
  13. JemPD

    Michael Sharpe skewered by @JohntheJack on Twitter

    Ahhhh, well, that explains it then. He reacted in a cognitively unhealthy way to a 'minor' health event - not saying tinnitus is nothing - i have it quite badly & it can be miserable at times, but it's not exactly rocket science to avoid focusing on it. But he did focus on it, he obsessed over...
  14. JemPD

    Re-framing GET as pacing, or vice-versa

    exactly patronising b*stards, they really do think we are stupid. Very funny clip @large donner
  15. JemPD

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    haha lol they are 'chandlers' indeed....... what a marvellous freudian slip :D It should be called that from now on imo. Sorry @Suffolkres i didnt realise you'd written it :confused: I wasnt suggesting in anyway that you were ill informed! Was clearly too fuzzy to be posting :rolleyes:
  16. JemPD

    Personality as a risk factor for ME/CFS and similar diseases

    You dont see people who've never been accused of a crime going around shouting "i didnt do it", do you? No. I wonder why, might it be because there is no need. You may as well say to someone who lives in the arctic circle 'even in Africa no one goes around in thermal underwear' It wasnt 'stuck...
  17. JemPD

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    It'd be good to point out to whomever wrote this that it's the Chalder Fatigue Scale, not the Chandler Fatigue Scale. I know it's pedantic, but errors like this make it look as if the author is ill informed, which i'm sure they're not
  18. JemPD

    CDC responds to false SMC factsheet claim

    Well done @Robert 1973 !!!
  19. JemPD

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I think you're right about using that to our advantage. Here's one study by Goudsmit, Jason, Nijs It's behind a paywall but i seem to remember reading it at the time thinking it was a good one https://www.tandfonline.com/doi/abs/10.3109/09638288.2011.635746 Wonder what @Jonathan Edwards...
  20. JemPD

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    you make a good point @strategist.
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