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  1. M

    Why are places allowed to not follow the NICE guidelines?

    I think the NHS as a whole needs to properly answer this question, transparently, in it's reply to the Regulation 28 Prevention of Future Deaths report, as it encompasses treatment under both the 2007 and 2021 Guideline.
  2. M

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    May not be relevant, my ability to even slightly read a scientific research paper, never mind understand it, was limited to null prior to my treatment under the NHS 12 years ago, and it's not much better now. However, even BACME are citing Madi Hornig et al from 2015 Distinct plasma immune...
  3. M

    Why are places allowed to not follow the NICE guidelines?

    also means no expensive extensive testing such as MRIs etc.
  4. M

    Puffy face

    I just asked my carer because she can always tell when I'm in a crash. She says she can tell as soon as she walks in as my eyelids and around the eyes become puffy.
  5. M

    Crowdfunding for David Tuller starts October 1st 2024

    That is a shockingly low number of donors. How many globally directly benefit from David's ongoing work and referencing it, just in the ME patient group, then add in Long COVID.
  6. M

    Book: There’s Nothing Wrong With Her by Kate Weinberg

    That's a best seller right there.
  7. M

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Is she describing 'stop' and visualisaton techniques - the Lightening Process? Definition of heretical of or relating to adherence to a religious opinion contrary to church dogma : characterized by heresy heretical writings 2 : of, relating to, or characterized by departure from accepted...
  8. M

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Interestingly he refers to 'activity' on 18 Oct which is referred to in the 2021 guideline and not GET which was excluded as a treatment from that guideline. Absent , as always, is any mention of consideration for patient safety.
  9. M

    Development and validation of blood-based diagnostic biomarkers for [ME/CFS] using EpiSwitch®… 2025, Hunter et al. (Oxford Biodynamics)

    I clicked on link and I arrived at a page asking for verification that I was a human. As a pwME obviously I didn't qualify so came back out. :android:
  10. M

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    You could just leave them empty to represent those who have been permanently silenced.
  11. M

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

    I think Dr Jake Hollis may be referencing from this: Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations. Morris G, Berk M, Maes M, Carvalho AF, Puri BK. Mol Neurobiol. 2019 Aug;56(8):5866-5890. doi: 10.1007/s12035-019-1498-1...
  12. M

    Who is Simon Wessely?

    :rofl: I remember this, absolutely brilliant!
  13. M

    Who is Simon Wessely?

    Thanks Valerie. I remember reading your view of it quite a while ago, but I'll refresh my memory on it now. My first thoughts, depending on what he's arguing, went to Article 8 Access to Justice.
  14. M

    Who is Simon Wessely?

    No access Liability for psychiatric illness - ScienceDirect Liability for psychiatric illness, Wessely S, Journal of Psychosomatic Research, Volume 39, Issue 6, 1995, Pages 659-669, ISSN 0022-3999, https://doi.org/10.1016/0022-3999(95)00067-S...
  15. M

    Who is Simon Wessely?

    Anyone know where the source of this info may have come from?
  16. M

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

    I thought that'd be the answer, but just wanted to check, thanks.
  17. M

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

    I'm adding a link to the S4ME Open Letter thread regarding the 2019 Larun et al Review to the chronology I'm preparing, if that's OK? The purpose is that it shows the ongoing live complaint regarding harm together with multiple warnings about concerns for patient safety for the last 5 years...
  18. M

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

    I'm developing a theory. I was out for the count during 2019 - 2021. Does anyone know off the top of their heads when NICE first announced their review of the 2007 Guideline? ETA don't worry, found it
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