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  1. Sly Saint

    News from Dysautonomia International

    videos available on vimeo https://vimeo.com/485618376
  2. Sly Saint

    Reclaiming terminology for ME/CFS

    Post-Exertional Malaise: How to Cope with Crashing After Activity https://thehealthsessions.com/post-exertional-malaise-how-to-cope-with-crashing-after-activity/ pretty soon everyone will be saying they have PEM.
  3. Sly Saint

    David Tuller interviews Adam Lowe about his experience as a lay member of the NICE ME/CFS guideline committee

    I started working on one based on the youtube generated transcript but don't think I'll get it done so you might as well just read the transcript on youtube, although as always there are some unusual results eg "positive exertional males" for pem:D
  4. Sly Saint

    United Kingdom: National Health Service (NHS) news

    https://www.england.nhs.uk/patient-safety/learn-from-patient-safety-events-service/ (there is a short video that explains how the system will work) I've not been able to access the patient eform so I don't know what information they ask for.
  5. Sly Saint

    United Kingdom: Newcastle-upon-tyne Hospital Trust

    Just been looking through other CFS/ME CFS, clinics (am yet to find one that is ME/CFS) and a lot seem to be avoiding actually saying what they do with regards to treatment by saying "using evidence based treatment programmes following NICE guidelines" eg...
  6. Sly Saint

    UK House of Lords/ House of Commons - relevant people and questions

    Barry Sheerman Labour/Co-operative, Huddersfield To ask the Secretary of State for Health and Social Care, what steps he is taking to help ensure high standards of care by the NHS and other healthcare providers to those diagnosed with Myalgic Encephalomyelitis. Tweet Share Hansard source...
  7. Sly Saint

    Covid-19 - Psychological research and treatment

    Hair samples capture Covid’s stressful toll https://www.nottingham.ac.uk/vision/hair-samples-capture-covids-stressful-toll
  8. Sly Saint

    A Botanical; Containing Cistanche & Ginkgo Extracts; Improves CFS Symptoms in Adults: A Randomized, Double-Blind, Placebo-Controlled study,2021,Kan

    A Botanical Product Containing Cistanche and Ginkgo Extracts Potentially Improves Chronic Fatigue Syndrome Symptoms in Adults: A Randomized, Double-Blind, and Placebo-Controlled Study Juntao Kan1†, Junrui Cheng1,2†, Chun Hu3†, Liang Chen1, Siyu Liu1, Dawna Venzon3, Mary Murray3, Shuguang Li4*...
  9. Sly Saint

    Reclaiming terminology for ME/CFS

    see post here re origins of 'brainfog' https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19-long-covid.14074/page-191#post-330649
  10. Sly Saint

    Blog: The Science Bit by Brian Hughes

    https://www.s4me.info/threads/evidence-based-care-for-people-with-chronic-fatigue-syndrome-and-myalgic-encephalomyelitis-2021-sharpe-chalder-white.22905/page-8#post-394005
  11. Sly Saint

    Reclaiming terminology for ME/CFS

    Brain fog, and now post exertional malaise, terms that were until fairly recently only used to describe ME/CFS symptoms have been hijacked and become generic terms. Maybe we should learn from the Fibromyalgia community? They use fibro fog, there are many article on this (even the NHS recognise...
  12. Sly Saint

    Symptoms and signs of chronic fatigue syndrome, 1991, Komaroff

    "[Fatiguability]: Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from...
  13. Sly Saint

    Symptoms and signs of chronic fatigue syndrome, 1991, Komaroff

    Abstract This review summarizes the symptoms and signs seen in patients with chronic fatigue syndrome (CFS). It is based on the authors' experience with two cohorts of approximately 510 patients with chronic debilitating fatigue and on the reported experience of other investigators with similar...
  14. Sly Saint

    EU Petition 2019 - opportunity to lobby for funding for ME research

    Merged thread Renewed discussion of the petition " The meeting is planned to take place in Brussels on 1 December 2021. The petition on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is scheduled to be dealt with at around 10:15 CET. Evelien Van Den Brink, ME/CFS patient and one of...
  15. Sly Saint

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    moved post https://www.verywellhealth.com/what-is-malaise-189334 so PEM is a separate 'disorder'? since when?
  16. Sly Saint

    United Kingdom: Sussex & Kent ME/CFS Society News

    "The Winter edition of the Sussex & Kent ME/CFS Society’s quarterly 16 page newsletter has been published. Included in this issue are items about the Malmaison Conference by Prof Les Findley, Anna Gregorowski (BACME), Dr Gabrielle Murphy, Caroline Lucas MP and James Shute of the Sussex CFS/ME...
  17. Sly Saint

    News from Japan

    Japanese youths suffering fatigue from aftereffects of COVID infection https://mainichi.jp/english/articles/20211124/p2a/00m/0na/018000c
  18. Sly Saint

    A Comprehensive Examination of Severely Ill ME/CFS Patients, 2021, Chang et al

    This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue
  19. Sly Saint

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    interesting reference to spinal tap...... Trudie Chalder in one of her presentations talking about the development of the CFQ "So to get us started; with Simon and I think its more Simons research than mine that we developed a fatigue scale, which is now called The Chalder fatigue scale, but I...
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