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  1. Sly Saint

    Researcher Interactions Video: Science for ME Q&A with Dr Sadie Whittaker from Solve ME/CFS Initiative, May 2019

    Struggled with this transcript. Can't hear properly/understand some of what Dr Whittaker says. I've removed a lot of 'you know's 'right's and 'likes' to try and make it easier to read, but there are a number of places where I couldn't figure out what exactly she was saying. So there are quite a...
  2. Sly Saint

    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    I'm surprised that they didn't spot it. The £5m (or sometimes $8m is used in US publications) is all over the place (a lot of headlines too). Good reference source is me-pedia https://me-pedia.org/wiki/PACE_trial @Russell Fleming
  3. Sly Saint

    Blog: The PACE Trial: How a Debate Over Science Empowered a Whole Community [Carolyn Wilshire/ME Association]

    typo? "There are few in the ME/CFS community who have not heard of the PACE Trial. This £1.5 million clinical trial"
  4. Sly Saint

    Need help with poster for Millions Missing event

    if you google posters for meawareness you might get some ideas eg
  5. Sly Saint

    Genetic Predisposition for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study 2019 Perez Nathanson Klimas et al

    Genetic Predisposition for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Pilot Study Melanie Perez1, 2, Rajeev Jaundoo1, Kelly Hilton1, 2, Ana Del Alamo1, 2, Kristina Gemayel1, Nancy G. Klimas1, 2, Travis J. Craddock1, 3* and Lubov Nathanson1, 2* Provisionally accepted; full text...
  6. Sly Saint

    May 2019 - Awareness Week including Millions Missing

    #MillionsMissing South Carolina: ME Awareness Day Press Conference article referred to https://www.postandcourier.com/features/people-in-sc-may-have-this-fatigue-causing-illness-it/article_7d95a8c2-6c1b-11e9-9e17-6347b3ab9a1e.html
  7. Sly Saint

    Current trial: Reducing Orthostatic Intolerance With Oral Rehydration in ME/CFS Patients 2019 - New York Medical College

    https://clinicaltrials.gov/ct2/show/study/NCT02854683
  8. Sly Saint

    The IAPT Pathway for People with Long-term Physical Health Conditions and MUS. Full implementation guidance.

    The Improving Access to Psychological Therapies (IAPT) Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms from March 2018...
  9. Sly Saint

    Discussing acceptance and commitment therapy in ME/CFS.

    other threads on ACT https://www.s4me.info/threads/acceptance-and-commitment-therapy-for-muscle-disease-actmus-protocol-for-a-two-arm-randomised-controlled-trial-of-a-brief-guided-self-help-act-prog.5597/ https://www.s4me.info/threads/sweden-act-for-me-cfs-an-open-case-trial.4684/
  10. Sly Saint

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    I found this Youtube video of Ron Davis life fascinating. I don't think a lot of his current critics are fully aware of his previous achievements.
  11. Sly Saint

    Nature: Rein in the four horsemen of irreproducibility

    retweeted by Michael Sharpe (!?) it takes one to know one
  12. Sly Saint

    The Mightly - How I’m Challenging the Feeling of Another Year Wasted With Chronic Fatigue Syndrome (2019) Jo Moss

    https://themighty.com/2019/05/missing-out-life-chronic-fatigue/
  13. Sly Saint

    Psychiatrist Peter White at the Royal Society of Medicine 2008 - Defining CFS/ME

    all the videos from that conference plus many, many others on dedicated S4ME thread https://www.s4me.info/threads/me-videos.1030/ eta: summary of the conference by Charles Shepherd http://www.investinme.org/Article-170 RSM Conference Summary.htm eta2: transcript of first 6 minutes by Suzy...
  14. Sly Saint

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    I asked the OMF about testing GWS patients last September. https://www.s4me.info/threads/ronald-w-davis-phds-presentation-at-the-iimec13.5793/page-4#post-106159
  15. Sly Saint

    May 2019 - Awareness Week including Millions Missing

    Interview with Tina Rodwell starts around 9.30 ends 24.00 (before then music and political stuff); not sure about the accuracy of the 'facts'. Around 17.00 talk about #Millionsmissing, POTS (postural orthostatic tachycardia syndrome), NICE guidelines. after that it's all re news/politics...
  16. Sly Saint

    General news about Fabricated and Induced Illness syndrome (FFI)

    They replayed some of the interview with Dr Glaser (from previous programme) see https://www.s4me.info/threads/on-bbc-morning-there-was-a-mum-and-daughter-talking-about-fii.8523/#post-149504 ME comes up around 11.20 (interviewer says ME makes 'children who have it feel extremely lethargic')...
  17. Sly Saint

    Merryn Crofts - our last family statement

    I think the caption under the third photo is wrong. Isn't Merryn on the RHS? (caption says Amy)
  18. Sly Saint

    Cognitive behavioural therapy for ME/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review, 2019, Vink & Vink-Niese

    @Mark Vink thank-you so much for this long overdue analysis of the ME/CFS CBT rubbish so often cited as 'evidence' of 'proven' effectiveness of treatment.
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