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  1. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Many thanks to Steungroep ME en Arbeidsongeschiktheid (Netherlands) who have signed the letter and are supporting the petition
  2. NelliePledge

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Presumably meaning what is proffered is in lieu of effective treatment therefore can at best be described second rate
  3. NelliePledge

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Yes it will be. https://meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf The IoM report claimed 17-24 billion dollars in USA https://www.cdc.gov/me-cfs/about/index.html#:~:text=An estimated 836,000 to 2.5,medical bills and lost incomes.
  4. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    :thumbup: 10k is definitely achievable. Great help if members who have social media presence, especially folks with blogs and some followers, can share the link regularly every couple of weeks or so
  5. NelliePledge

    News from Germany

    Thanks @EndME i will add them to our list
  6. NelliePledge

    News from Germany

    We’ve heard back from Lost Voices Stiftung who have joined the letter signatories :)
  7. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Many thanks to Lost Voices Stiftung for signing the letter and supporting the petition
  8. NelliePledge

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    I’m sorry your daughter was made worse by it
  9. NelliePledge

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    If they do a study properly it will show either way whether the drugs help. If not then people can stop experimenting unnecessarily.
  10. NelliePledge

    The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

    @Perrier I think most patients have tried LDN is overstating things significantly. I only know of one person. I haven’t tried it and I suspect a fair number here haven’t either.
  11. NelliePledge

    Guardian — Health anxiety can be all-consuming. Accepting uncertainty is an important step

    Yes and this to me is why part of GPs actually treating (in the broadest sense) PWME should involve annual or biennial reviews.
  12. NelliePledge

    NHS Wales - Primary fatigue service

    Where is that quote from @Mij
  13. NelliePledge

    News from The Netherlands

    That was successful thanks
  14. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Many thanks to Millions Missing Holland who have signed the letter and support the petition.
  15. NelliePledge

    Redefining Disease: Are Bacteria and Viruses Behind Child Psychiatric Conditions?

    Hadn’t heard of BNN so I looked at about us https://bnn.network/about/. Still not much the wiser to be honest other than it was started by one guy Gurbaksh Chahal. the article is at least NICE compliant with the wording in the final paragraph
  16. NelliePledge

    Guardian — Health anxiety can be all-consuming. Accepting uncertainty is an important step

    Those are excellent comments you’ve highlighted @Andy thanks for sharing it helps to see people getting sensible messages up.
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