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  1. NelliePledge

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I don’t actually think there’s any certainty Javid will remain in post until 2024 - that’s a long time. We need substantial commitments this summer. And to be frank in this economic context even commitments to funding could be overturned until any contract is signed. Sounds like I’m being...
  2. NelliePledge

    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    But in this case it’s worse they actually gave him a platform at their meeting
  3. NelliePledge

    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    And the British are supposed to be experts at fudging issues. Certainly on GET the CDC appears to be leading the world on fudging.
  4. NelliePledge

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    Yes weasel words. How is that meeting the right context for “engaging with mainstream opinion” they need to set up professional meetings involving professionals who have a clue to enlighten mainstream opinion.
  5. NelliePledge

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    So how on earth did he get invited? @dave30th CDC removing GET from their website doesn’t mean much if they still allow it to be promoted in their own meetings
  6. NelliePledge

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    It is good that his personal experience has given him an open mind. He has said some positive things. This being a substantial contribution to the recent momentum is a double edged sword as there’s the prospect of a ministerial reshuffle. So let’s hope there’s some tangible results soon.
  7. NelliePledge

    Remedee's endorphin stimulator for fibromyalgia gains FDA breakthrough status

    Endorphin stimulation…. Buzzing…. Sounds somewhat early 20th century
  8. NelliePledge

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I could access the full article through Sean’s tweet posted up thread. https://www.s4me.info/threads/uk-parliament-myalgic-encephalomyelitis-chronic-fatigue-syndrome-announcements-statement-made-on-12-may-2022.27591/#post-418603
  9. NelliePledge

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Charles Shepherd has contacted them. Hopefully they will edit. They have generally been one of the better outlets on ME articles in the last couple of years
  10. NelliePledge

    Gastric herpes simplex virus type 1 infection is associated with functional gastrointestinal disorders [with or without FM], 2022, Duffy et al

    Presumably want their cake and to eat it yes admit there’s a physical cause but still try pushing that there’s s psychosomatic element if it’s chronic.
  11. NelliePledge

    CBT for Long-Term Conditions and Medically Unexplained Symptoms by Helen Moya and Philip KINSELLA

    These people need to realise we are in the 3rd decade of the 21st Century, their attitudes are so last century.
  12. NelliePledge

    British Medical Association: "Known unknowns, and as yet medically unexplained diseases" by Dr David Strain

    Apart from the date I think this is a pretty good article ETA and while the date might be a big issue for some in the community for me the ‘exact’ date isn’t something the GPs need to take on board the non psychosomatic message
  13. NelliePledge

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    This is significant. For example if someone decided to write to their MP to ask the CCG about plans in response to NICE guidelines such a statement by the Health Secretary would possibly assist in getting some previously disinterested MPs to engage with ME/CFS as a serious issue.
  14. NelliePledge

    ME Awareness Day / Week / Month, May 2022

    I know we still have a long way to go. However for the first time I have felt confident enough to have tagged in my GP surgery into a Facebook post about International ME day and I have written to my CCG about the NiCe implementation statement and asked what their plans are.
  15. NelliePledge

    Why use Forget Me Not as a symbol for ME?

    In the UK the Alzheimer’s Society uses the forget me not. In their logo and fundraising
  16. NelliePledge

    New book: 'Breaking Free' (PASC: ME and Covid-19)

    Oh I can think of a few gestures and expressions of my own to use Jan, I don’t need your brainwashed input
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