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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    The wheel has suffered from over invention for so long ....
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    Resources for kids of parents with ME

    From memory there is a book written by a parent with ME for kids ( I will try and find a link over next couple of days )
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yes. A big general data capture and then analysis might find some interesting things. Wearable make this eminently doable. We' ve found oxygen saturation in PEM can dip significantly.
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    News from Scotland

    Not very engaging
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    News from Scotland

    I've just highlighted this to ME Action Scotland - they are currently working on updating guidance post NICE.
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    @PhysiosforME Sadly I think you may be very busy
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    Guardian article - The high cost of living in a disabling world, 2021, Jan Grue

    Moved post Good article in Guardian https://www.theguardian.com/society/2021/nov/04/the-high-cost-of-living-in-a-disabling-world The high cost of living in a disabling world Illustration: Sébastien Thibault/The Guardian Jan Grue At times, it feels as if the disability rights movement won...
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    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    The " leading paediatric clinic" and still not a clue. It has always been idiopathic chronic fatigue not ME/CFS. PEM had a fleeting mention recently but mainly as increased fatigue It's groundhog day ... It will be interesting to see how mechanisms for harm recording impact this service...
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    Covid-19 vaccines and vaccinations

    issues here are distances to travel to get to hubs to be vaccinated - especially for more vulnerable patient groups . Previously this group was part of the GP localised delivery. We had many local community cntred vaccination points for initial 2 doses - much reduced for boosters. OH has been...
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    Acceptance and Commitment Therapy for ME/CFS - Discussion thread

    I suspect ACT will go hand in hand with a redefiniton of what recovery is - from what we would understand to the more psych notion of adjusted to a new life- - this seems to be on the cards for kids from recent EC research/ musings.
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

    Fantastic news .
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

    Tweeted to my MP who is supportive and whose husband is German
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    Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term conditions, 2021, Reid et al

    Clears the way for social prescribing by therapists?
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    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Dr Ben Marsh has been trying to engage with him for some time and it seems it may be starting to have some effect
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

    signed and shared to private FB groups
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    ME/CFS services in the United Kingdom

    Perhaps worth tweeting " qualification" of lead in your area for what is a serious multifaceted illness ( making the point that no " medical" input) or perhaps contrasting the " team" for ME with the "team" for MS/MND/pick your illness ( we don't have any clicnics here to make this point but...
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    ME/CFS services in the United Kingdom

    from webpage - East Coast Community Healthcare CIC Hamilton House Battery Green Road Lowestoft Suffolk NR32 1DE Tel. 01502 445445 Email. ecch.enquiry@nhs.net
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

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    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    All it takes for evil to flourish is good people doing nothing....
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    Problems with accessiblity for people who use wheelchairs

    Moved post Perhaps sums up the status of disabled people in UK today quite spectacularly. https://www.theguardian.com/environment/2021/nov/02/wheelchair-using-minister-denied-entry-to-cop26-venue
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