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  1. Suffolkres

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Moved posts Think this might be worth noting here especially in relation to what is going on within NICE? ? 'Awareness of the FOI response has got me looking at minutes of Guideline Committee [GC] meetings subsequent to the consultation on the draft. It takes time to download and find the...
  2. Suffolkres

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    HMB, you said today in a private email that this 2018 letter of complaint to NICE might be helpful in attempts to steer NICE in the right direction?
  3. Suffolkres

    The European Association of Psychosomatic Medicine (EAPM)

    https://growthpitstop.com/2020/08/01/strategic-projects-suffering-from-nodding-dog-syndrome/ I wasn't making it up...!
  4. Suffolkres

    The European Association of Psychosomatic Medicine (EAPM)

    nah, ..... it's NDS, Nodding Dog Syndrome....
  5. Suffolkres

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    I received this about NICE and 'The Summary' issue as H has now joined S4ME and drew my attention to the conundrum initially. 'Thanks for alert to this- it needs attending to, pleased that Caroline Struthers is taking it up with NICE. I really don’t see how NICE can hold the line that "the...
  6. Suffolkres

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    Dr Ira Madan MBBS (Hons) MD FRCP FFOM Consultant and Honorary Reader in Occupational Medicine Guy’s & St Thomas’ NHS Foundation Trust and King’s College London https://www.mrc.soton.ac.uk/cmhw/dr-ira-madan/ As well as developing national quality indicators for occupational health, she directed...
  7. Suffolkres

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    :mad::(:wtf::unsure: This is EXACTLY the same scenario as 'NHS Heath At Work' and their crap... aka Kings and Dr Ira Madan-- Parliamentary Occupational Health Advisor...from Faculty of Occupational Medicine.......FOM https://www.nhshealthatwork.co.uk/images/library/files/Clinical...
  8. Suffolkres

    United Kingdom: ME Research Collaborative (MERC) [was CMRC] news

    I have always thought of Holgate as classic fence sitter.... but he did deliver decisively on Ella's case on Air Pollution so credit there. https://www.independent.co.uk/news/uk/home-news/ella-adoo-kissi-debrah-air-pollution-law-b1835395.html
  9. Suffolkres

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    https://www.independent.co.uk/arts-entertainment/tv/features/line-of-duty-finale-season-7-b1840231.html Mother of God, let that be the end of Line of Duty Edited, sorry Trish! Could not resist a wee donkey.....
  10. Suffolkres

    Dr Myhill’s complaint to GMC about PACE authors.

    I am pleased to hear of both positive experiences and accept people's concerns about Sarah. she has never been prepared to capitulate to the NHS orthodoxy or the flavour of the month. She is too much her own person to be dictated to and prepared to make herself a bit unpopular with fellow...
  11. Suffolkres

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

    Linked to previous posting on DT's Crowdfunding etc... https://www.theatlantic.com/health/archive/2021/04/john-james-aids-treatments-covid-pandemic/618679/ https://covidsalon.com/ CovidSalon: Treatment Options by John S. James, April 17, 2021 An AIDS treatment activist on COVID Early...
  12. Suffolkres

    Crowdfunding: Trial by Error [David Tuller] Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Spring 2021

    Read this interesting report. Dave have you reached out/had contact with James? Would be be another string for the bow? Report is good other than I take exception to some pointed descriptive phrases...
  13. Suffolkres

    Crowdfunding: Trial by Error [David Tuller] Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Spring 2021

    Is it Sharpie's fault He's in the midden... Rhetoric aside, the fact remains It's Tuller D who'll get the gains! ( Mods maybe more suited to Graham's page!?)
  14. Suffolkres

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Bravo Trish! Duty, (of Candor) I suggest? THE DUTY OF CANDOUR is a statutory (legal) duty to be open and honest with patients (or 'service users'), or their families, when something goes wrong that appears to have caused or could lead to significant harm in the future. The duty of candour - CQC
  15. Suffolkres

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

    Very good and welcome suggestion.
  16. Suffolkres

    Crowdfunding: Trial by Error [David Tuller] Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Spring 2021

    Hi David, there is talk of (legal) action in S4ME -unlikely due to costs and difficulties in the UK of framing such a case. Better we all dip in our pockets and fund you to do your business approach, as it's far cheaper, cost effective and we do get a certain entertainment factor thrown in (...
  17. Suffolkres

    Dr Myhill’s complaint to GMC about PACE authors.

    But at least she is willing to give advice.... and she gives patients some control, chance of symptom relief and hope. It's not just that ''things' in the NHS may be so routinely terrible'-ME and CFS Services are non existent or inadequate......or are filling the pockets of these private Social...
  18. Suffolkres

    Dr Myhill’s complaint to GMC about PACE authors.

    I challenge anyone to find one complaint from any of her patients. Complaints have been from the medical profession who do not welcome anything outside their (NHS) orthodoxy.
  19. Suffolkres

    Dr Myhill’s complaint to GMC about PACE authors.

    Someone has to do it and Sarah has had LOTS of experience with the GMC! Being targeted, and being the complainant- Don't forget she took the original GMC complainer "Jonesie" from Queens Romford himself before the GMC for fitness to practice!
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