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  1. Sly Saint

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

    I hate to say it but this seems like a sneaky way to get the Lightning Process into the mix.
  2. Sly Saint

    PACE trial data

    see https://www.s4me.info/threads/nice-health-topics-tiredness-fatigue-in-adults-includes-cfs.20002/page-4#post-359036
  3. Sly Saint

    PACE trial data

    Just tried again and even PACE trial now seems problematic; luckily the other link I posted does work. So the easiest way to access the request data page is to go through the Quick study lookup and use the Protocol ID : MRC-G0200434 https://search.vivli.org/
  4. Sly Saint

    BMJ: Chronic fatigue syndrome and Long Covid, moving beyond the controversy, 2021, Newman

    This is a bit bizarre considering most IAPT patients are given the same CBT regardless of their illness and Trudie Chalder said "The term 'somatic symptom disorder' which is very controversial but I really like it. I like it because the same model can be applied irrespective of the cause of the...
  5. Sly Saint

    Survey: what explanations GPs use for conditions that have no agreed biomedical cause and the impact of those explanations on social support & stigma.

    Had a look at her twitter feed and she retweeted a tweet of Michiel Tack about a David Tuller piece, and there is this however, the actual survey is : Explanations of MUS " Thank you for your interest in taking this survey on the the explanations given by medical professionals to people with...
  6. Sly Saint

    Science for ME page on MEpedia

    Any chance someone could update the page?. https://me-pedia.org/wiki/Science_for_ME
  7. Sly Saint

    EFT (Emotional Freedom Technique)...coming to a CFS clinic near you? & a possible advocacy opportunity?

    ITM 2021 | Day 2, Topic: EFT Tapping for ME/CFS and Long Covid from Practitioner Jacqui Footman https://www.youtube.com/watch?v=qCdjdjIeQl0
  8. Sly Saint

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

    "In this case NICE received a complaint from someone who is carefully monitoring our social media content." Was this a stakeholder? I thought that CS was a non-voting member of the committee to allow him to continue with his duties as Medical Advisor for the MEA? (I think it says on the other...
  9. Sly Saint

    Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related QoL in ... ME/CFS, 2021, Castro-Marrero et al.

    If you look at the research done by this group by clicking on the Castro-Marrero tag at the top of this thread, they have suggested other supplement combinations and come up with similar 'findings'.
  10. Sly Saint

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    Ministers could merge disability benefits and want to cut future spending, says green paper July 2021 https://www.disabilitynewsservice.com/ministers-could-merge-disability-benefits-and-want-to-cut-future-spending-says-green-paper/
  11. Sly Saint

    Severe M.E Day - 8th of August 2021

    UNDEREXPOSED within four walls of severe m.e photography exhibit trailer https://www.youtube.com/watch?v=dT53W0GWQIg
  12. Sly Saint

    Perrin Technique

    Very old video has been posted on Youtube by a Perrin Technique practitioner. (https://www.robinkiashek.co.uk/ Robin is London Osteopath and Naturopath with clinics in Central London, Soho and North London, registered with both The General Osteopathic Council and The British Naturopathic...
  13. Sly Saint

    Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related QoL in ... ME/CFS, 2021, Castro-Marrero et al.

    Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related Quality of Life in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Randomized, Double-Blind, Placebo-Controlled Trial Castro-Marrero et al Abstract Myalgic...
  14. Sly Saint

    Blog: How Long COVID Is Forcing a Reckoning with the Neglect of Post-Infectious Chronic Illnesses

    https://blog.petrieflom.law.harvard.edu/2021/07/29/long-covid-chronic-illness/
  15. Sly Saint

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    Abstract Introduction: Persistent polyclonal B-cell lymphocytosis (PPBL) is a rare and still poorly understood entity, with 90% of cases occurring in female smokers. Patients often appear tired and in pain, but the clinical symptoms remain imprecise. The main risk is the development of lymphoma...
  16. Sly Saint

    PACE trial data

    The PACE trial data is apparently now available. see https://www.s4me.info/threads/nice-health-topics-tiredness-fatigue-in-adults-includes-cfs.20002/page-4#post-359239 study search link https://search.vivli.org/?search=pace trial...
  17. Sly Saint

    News from Germany

    ME / CFS - Symposium Fulda September 4th, 2021 The event will be broadcast live on YouTube. The participation link can be found on the Fatigatio eV homepage under "News" prior to the event. https://www.fatigatio.de/news...
  18. Sly Saint

    UK Action for ME - policies, actions and publications - discussion thread

    https://register-of-charities.charitycommission.gov.uk/charity-search?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=2&p_p_state=maximized&p_p_mode=view&p_p_resource_id=%2Faccounts-resource&p_p_cacheability=cacheLevelPage&_uk_gov_ccew_onereg_charitydetail...
  19. Sly Saint

    UK Action for ME - policies, actions and publications - discussion thread

    "Read though AFME's updated booklet on pacing. As an expert on this, I can inform readers that this is APT, not pacing. It's tone is Daily Express, and there's no real science except for ref re 'fatigue'. APT was less helpful than CBT and GET in PACE trial. We can do better."...
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