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  1. MSEsperanza

    Exploring the validity of the chalder fatigue scale in chronic fatigue syndrome - 1998 Morriss et al

    Agree with both. I was coming from an other perspective. There seems to be a consensus that in trials on therapist-delivered treatments where blinding is not possible, objecive measures are needed. There also seems to be a certain consensus that for trials on certain illnesses like ME...
  2. MSEsperanza

    UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

    Thank you @PhysiosforME. I second other forum people's applause. Have you thought about including a quick cognitive test? Maybe something like @Graham is working on? And/ or any idea to protocol cognitive activity as well, maybe only over some days (so that just protocolling cognitive...
  3. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Apologies if this was already mentioned -- regarding testimonies of adverse effects: https://www.s4me.info/threads/trial-by-error-the-lightning-process-is-“effective”-really.9586/#post-169564 And regarding scientific proof of the premises of LP -- he tried...
  4. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Only able to skim and not able to write anything coherent at the moment, so just dropping some lines here I drafted for another purpose a while ago -- in case there is something useful in it for you, @Marky -- and thanks for your work on this! "Previously, Parker advertised that LP could...
  5. MSEsperanza

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    Looking at the abstract and table 2, the first part of your sentence seems to be both correct and relevant, but did W. really state that the treatment was effective? Perhaps I missed something in the translation of the reply or was it in the paper (only skimmed)? In the reply I only find -...
  6. MSEsperanza

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    "All in all, this study is a small but important contribution in trying to improve the treatment options for patients with long-term fatigue." A remarkable self-rating, especially in combination with the reply's closing sentence: "No conflicts of interest stated."
  7. MSEsperanza

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    Only skimmed the thread & the paper. It's hidden in the full text: https://bmjpaedsopen.bmj.com/content/bmjpo/4/1/e000620/DC1/embed/inline-supplementary-material-1.pdf?download=true Edit: cross-posted with @Theresa Also found a related paper in a journal called 'Music and Medicine' ...
  8. MSEsperanza

    Valerie Eliot Smith: COVID-19, NICE and ME: towards litigation?

    Haven't read the PACE trial paper on adverse events, so just drop the link in case it's useful for this thread: Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome. Dougall D, Johnson A, Goldsmith K, Sharpe M, Angus B, Chalder T...
  9. MSEsperanza

    Lightning Process study in Norway - Given Ethics Approval February 2022

    However, allegedly "supported by recent research with the University of Bristol" -- from Phil Parkers' LP site: Are there any unpleasant side-effects or downsides? In our 21 years of experience, and supported by recent research with the University of Bristol, applying these compassionate and...
  10. MSEsperanza

    #MEawarenesshour every wednesday on twitter

    I'm not on Twitter but.... how about reminding people of David Tuller's piece about the SMILE (Lightning Process) study on stat news: https://www.statnews.com/2019/12/13/bmj-should-retract-flawed-chronic-fatigue-syndrome-research-paper/ edited to add link to forum thread...
  11. MSEsperanza

    Advice from 'experts' on post-viral fatigue following Covid-19 (NHS Oxford Health, Science Media Centre, ...)

    The PRG's Fatigue "Guide" is Guides are still up at the Worcestershire health and care site (under Mental Health).(*) In the same rubric there are three additional 'guides' authored by other groups or individuals, i.e.: - Coronavirus and CBT by Kelly Watkins - Living with worry and anxiety...
  12. MSEsperanza

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Couldn't resist skimming the vanguard's text - so, another quote: Consultation-liaison psychiatrists will also continue to lead in many areas. These include emerging areas of medical genomics in psychiatry, the monitoring of drug-drug interactions, and the management of behavioral and cognitive...
  13. MSEsperanza

    Crowdfunding: Trial By Error: [David Tuller] Reporting on ME, CFS, "medically unexplained symptoms," and related stuff, 2020

    It works! But did you intend to have the updates still only on the old site (https://crowdfund.berkeley.edu/project/14941/updates/1 ) and not on the current crowdfunding site (https://crowdfund.berkeley.edu/project/20159/updates/1 ) ? Glad to hear that your mother seems to be safe and very alert.
  14. MSEsperanza

    Crowdfunding: Trial By Error: [David Tuller] Reporting on ME, CFS, "medically unexplained symptoms," and related stuff, 2020

    ... and the now added link / 3. update on the old site doesn't go to the project[edit] crowdfunding site at all.... :emoji_tea:, @dave30th ? Edit 2: The link is fixed now but the updates are still only on the old site (https://crowdfund.berkeley.edu/project/14941/updates/1 ) not on the...
  15. MSEsperanza

    Crowdfunding: Trial By Error: [David Tuller] Reporting on ME, CFS, "medically unexplained symptoms," and related stuff, 2020

    The update seems to have been posted on the page from last years' crowdfounding - at least the link posted above(*) directs me to the old page @dave30th (*) as well as the link in the UC Berkeley e-mail.
  16. MSEsperanza

    Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study, 2020, Broadbent et al

    Thanks for explaining, @dave30th , and thanks @Michiel Tack for substantiating some criticism. I agree it's important to differentiate, and to take the historical context into account. (I don't know the details to understand which therapy is GET in the sense of the cognitive-behavoristic...
  17. MSEsperanza

    Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study, 2020, Broadbent et al

    Hm, are you sure? The reference cited in @Dolphin's quote from the other Broadbent paper is: Wallman, K. , Morton A., Goodman C., Grove R., and Guilfoyle A.. 2004. Randomised controlled trial of graded exercise in chronic fatigue syndrome. Med. J. Aus. 180:444–448...
  18. MSEsperanza

    Question: Coronavirus & home sewn masks?

    How To Stop Face Masks From Fogging Up Your Glasses https://www.forbes.com/sites/rachelsandler/2020/04/16/how-to-stop-face-masks-from-fogging-up-your-glasses/#6aa930b12e6a
  19. MSEsperanza

    Advice on mask-wearing to protect against Covid-19

    The Royal Society of Medicine (UK) COVID-19 Series, Episode 6: Policymaking on masks for the general public: evidence-based or eminence-based medicine? Webinar, Tue 21 Apr 2020 from 12:30pm to 1:00pm https://www.rsm.ac.uk/events/rsm-studios/2019-20/pen65/ :emoji_mask: Edited to add...
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