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    Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, 2024, Kathleen Mudie et al

    Das et al is discussed here: https://www.s4me.info/threads/genetic-risk-factors-for-me-cfs-identified-using-combinatorial-analysis-2022-das-et-al.29445/#post-436520 and here https://www.s4me.info/threads/blog-new-study-links-14-genes-to-me-cfs.29511/#post-437195
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    Community nursing care for people with long COVID/post-COVID -Patient characteristics, case reports, and nursing interventions, 2022, Richter & Frei

    This a Swiss study, based on a Private Nursing service. see 2nd author: Linda Frei, RN, BSc, Private Community Nursing Service ‘Herzenssache’, Zurich, Switzerland. I wonder how applicable this is to the real world in Countries where there are far less resources available for health care.
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    United Kingdom: Sussex & Kent ME/CFS Society News

    All Charity Trustee information for England & Wales is available via the Online Register: https://www.gov.uk/find-charity-information https://register-of-charities.charitycommission.gov.uk/charity-search/-/charity-details/3973095/trustees COLIN NEIL BARTON Chair STEPHEN VAUGHAN Trustee DAVID...
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    United Kingdom - Thérèse Coffey appointed Secretary of State for Health and Social Care, Sept 2022

    "New secretary of state ways of working preferences” New regime at the Dept of H&SC has identified the real priorities: "An email, understood to have been sent to staff at the Department of Health and Social Care and sent on to workers at the UK Health Security Agency (UKHSA), is...
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    Long Covid in the media and social media 2022

    For non UKers - GBN news is a UK Gov licensed free to air broadcaster - albeit with a very low audience ratings.
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    UK: Impact of Inflation on Charities

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    Chronic illness makes UK workforce the sickest in developed world

    Merged thread UK:Economy. Long-term ill health now highest *on record* Twitter thread on UK economic data - includes charts relating to long term chronic illness. May have impact on social attitudes to long term ill health and have relevance to advocacy. Also huge number of vacancies in health...
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    The impact of a brief mindfulness training on interoception: A randomized controlled trial, 2022, de Lima-Araujo et al

    Relevant to some FND research. Shows interoceptive awareness can be learned
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    The impact of a brief mindfulness training on interoception: A randomized controlled trial, 2022, de Lima-Araujo et al

    The impact of a brief mindfulness training on interoception: A randomized controlled trial Geissy Lainny de Lima-Araujo, Geovan Menezes de Sousa Júnior, Thatiane Mendes, Marcelo Demarzo, Norman Farb, Draulio Barros de Araujo, Maria Bernardete Cordeiro de Sousa Abstract Interoception is a...
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    High-intensity resistance training in people with multiple sclerosis experiencing fatigue: A randomised controlled trial, 2022, Englund et al

    Study shows that of those who have MS and a)can, and b) are motivated to, follow an exercise regime (apprx 50% of the initially identified cohort) feel better for doing exercise.
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    Genetic Risk Factors for ME/CFS Identified using Combinatorial Analysis, 2022, Das et al

    Precision Life Ltd https://find-and-update.company-information.service.gov.uk/company/08687703/filing-history I'm unclear what the practical purpose of this study is, and the repeated reference to Precision Life's "platform" gives the overall sense that this is something of a promo. The study...
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    United Kingdom - Thérèse Coffey appointed Secretary of State for Health and Social Care, Sept 2022

    There's a big difference between how an MP can behave at the Constituency level were there is no statutory influence on how they conduct themselves, and how they operate as a senior Cabinet Minister. Certainly in general terms Coffey's conduct at the Department of Work and Pensions gives rise...
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    JK Rowling new book — chronic illness references

    The cross dressing bad person trope has been widely explored https://criticalmediaproject.org/transgender-serial-killers/ and is frankly hackneyed I'm not surprised the BBC saw it as 'avoidable'.
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    Suzy Weiss Manifesto on “Spoonie” Culture

    @rvallee has got this right above. The Substack account is that of just another right wing controversialist speaking to an ingroup who are confirming their beliefs. In this case it's their beliefs about 'young women' who are failing to live up to the ingroup's expectations of what they should...
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    United Kingdom: MPs ask Coffey why she is hiding nine secret DWP reports

    A couple of months old but of relevance as Coffey is now the Secretary of State for Health and Social Care: "MPs have asked the work and pensions secretary to justify her refusal to release nine potentially embarrassing reports about her department’s work, at least four of which focus on...
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    United Kingdom - Thérèse Coffey appointed Secretary of State for Health and Social Care, Sept 2022

    Yes I don't think there's any definitive reason to think that the gains that have been made will be lost - just that there's unlikely to be the enthusiasm from the top that was there with Javid.
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    JK Rowling new book — chronic illness references

    Well known problem with commercially successful authors (and JKR is top of the heap) - publishers are very shy to offend their star turns by having editors do a proper job.
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    JK Rowling new book — chronic illness references

    Modern broadcasting is highly driven by legalism - everything from script to screening will go via the lawyers. Of course there will be interpretations but decisions about content aren't left to a few people in a glass walled office. It will be interesting to see how the previous Galbraith...
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    Treatment for that searing muscle pain?

    Oral analgesics mess me up so it's a balance as to whether to take anything - I avoid paracetamol entirely and rely on infrequent aspirin or ibuprofen. However ibuprofen gel applied externally is a help for the burning muscle symptoms, so that's my go to solution, though regular use on one spot...
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    United Kingdom - Thérèse Coffey appointed Secretary of State for Health and Social Care, Sept 2022

    Ministerial Appointments: September 2022 "The Rt Hon Dr Thérèse Coffey MP as Secretary of State for Health and Social Care. She will also be Deputy Prime Minister" In the light of this there may be certain attitude changes at the Dept Health and Social Care now that Sajid Javid has been...
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