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  1. Snowdrop

    Raynaud's Syndrome in Fibromyalgia and ME/CFS

    I had Raynaud's for maybe 5 years or so. It started out mild and became increasingly more often until it stopped altogether. It was after that that I would get issues such as fainting (or the slow version where you feel your vision narrow and if you sit with head down you can avert fainting)...
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    PACE trial data

    I'm just curious if anyone has now accessed and seen the data posted at vivli?
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    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Probably not on point for anything, just idle musing. Here's the scenario I picture when I read PH et al respond to challenges to their world view. They would like for things to remain the same or even better go back to how things were (when they felt unchallenged). Going into the office...
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    The circuit of symbolic violence in chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study, 2021, Gimeno Torrent

    Xavier Gimeno is unlikely to change his mind. His is a belief based on emotion not likely amenable to reason. The emotional basis of the belief is an attachment to a conceptual system. It cannot be tested for weakness only defended. ETA: a thought on clarification. Conceptual system here...
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    Millions Missing Canada advocacy, letter to political leaders during Federal Election 2021

    I'm not on twitter but it would be good to inform the press who write on health issues. @kellygrant1 (The Globe & Mail) @sharon_kirkey (National Post) and it could be useful to tag the University Health Network (Toronto) @UHN
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    Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times (Sean O'Neill)

    I found this interesting as I'd never heard of it: https://polybio.org/ Our Vision: To take current research, identify important existing trends, and translate the data into information that doctors can use in the clinic to help their patients. This includes the development of new advanced...
  7. Snowdrop

    WORLD EVIDENCE-BASED HEALTHCARE DAY 20 October 2021

    Flying it at half-mast might be the way to go.
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    Useful arguments regarding the evidence provided by psychological and biomedical ME research?

    In the media of late the BPS cabal rely over and over on saying that 'some people benefit, we know this from clinical experience'. Yet they have never answered the question (unless it's in the null PACE results) if the health of the people treated would have improved anyway naturally simply...
  9. Snowdrop

    Articles on NICE guidelines 'pause'

    The proponents of BPS therapies need to respond to the possibility that their recovered patients would recover even without their treatment. Because in times past that's exactly how it worked.
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    Health, Wellbeing and Prognosis of Australian Adolescents with(ME/CFS): A Case-Controlled Follow-up Study, 2021, Josev et al

    I wonder how many of these trials will be needed going forward? One hundred? Two thousand? Given that we know some people remain ill and CBT/GET have been debunked I wish gov't and other funding bodies would put money aside to research aetiology and cure or at least a treatment that actually...
  11. Snowdrop

    Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescents and Young Adult Cancer Survivors? 2021, Fauske, Reme et al

    https://radforsk.no/our-story/ INVESTMENTS AND COMMERSIALISATION Today Radforsk Investeringsstiftelse acts as a dynamic player working in every part of the research–to–commercialization eco-system – all the way from initial research results to listing companies. Since its establishment...
  12. Snowdrop

    Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

    Thanks @Andy I haven't had enough repeated exposure often enough to keep the various American orgs sorted in my mind.
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    Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

    I would certainly like to know more about the CFSAC (Solve) recommendation. How recent? And why, were the previous guidelines an issue? Sorry, if I read anything about this previously I have no memory.
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    Learning to feel tired: A learning trajectory towards chronic fatigue, 2018, Lenaert et al.

    I think there's a typo before the text. Says it was written in 2018. Perhaps should be 1820?
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    Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

    Thanks @Trish. I used up all my energy with my pointless rant and there's a lot to take in there. I take it from Denise's response the difference in tone is because the key questions have changed? It just all sounds like politics to me but can't quite grasp why or for who's benefit?
  16. Snowdrop

    Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

    Who is responsible for this new CDC review findings?
  17. Snowdrop

    Article in Verywell:Treating Post-Exertional Malaise in Chronic Fatigue Syndrome

    A pointless rant: As usual this article is written in a way that makes sense to the writer and colleagues from their outside perspective. Taking the standard wisdom of the need for exercise and finding a way to make it work for those poor people with PEM (which now is a new buzz word for them...
  18. Snowdrop

    WORLD EVIDENCE-BASED HEALTHCARE DAY 20 October 2021

    In 2021, we call on the global evidence community to share their experiences, expertise and stories on infodemic management, including facilitating accurate knowledge translation; knowledge refinement, filtering and fact-checking; building eHealth/science literacy; and monitoring, infoveillance...
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