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    ME Association: iterations of objectives between 2021 and 2023

    I wouldn't take the statement on the front page of the website as requiring a defintional change in the Charity's objectives. As long as the activity undertaken is subservient to the achievement of the stated objectives then the Charity is acting within its legal remit. The directors have...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    The numbers (2021) around which the debate/proposals etc revolve: Exploring Ways to Improve the Design of the Benefit System
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    Preprint:How prior and p-value heuristics are used when interpreting data, 2023, Hermer et al

    How prior and p-value heuristics are used when interpreting data Ethan Hermer, Ashley A Irwin, Dominique G Roche, Roslyn Dakin Abstract Scientific conclusions are based on the ways that researchers interpret data, a process that is shaped by psychological and cultural factors. When...
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    UK: Disability benefits (UC, ESA and PIP) - news and updates 2023 (including government plans to scrap the work capability assessment)

    My 'reading of the tea leaves': There's three main reasons why a UK Government uses a 'consultation'. 1/ (very rare) there's a genuine wish to understand what the target audience thinks; 2/ (common) the consultation is a way of softening the...
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    Analysis of research funded by UK bodies and assessed in the NICE guideline process?

    FWIW I'm confindent the lists I drew up were complete to that point. Pretty damning that none of that spending produced anything useful for a NICE review, something I'd not previously given thought to.
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    Long term outcome in patients with Functional Neurological Disorders, 2022, Siafaka

    Bristol Children's Hospital (BCH) is part of the same Medical School as Esther Crawley - senior author of the FND poster is also a Bristol Medical School lecturer and, while proximatey doesn't imply familiarity, Crawley's office is just down the hill from BCH. I think it's a safe bet on how CFS...
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    A study shows… David Nunan 2023

    A study shows… David Nunan "There is a growing epidemic of reference-based medicine and confirmation bias. Here’s how to spot it. In the age of information overload, finding a published study to support a viewpoint has become effortless. The phrase “A study shows…” has become ubiquitous, but...
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    Fundraising for ME/CFS research - opportunities, problems

    Capacity of the clinics only allows hundreds per annum - well below any Incident level required to sustain a 125k plus patient population. I do agree about GPs though, but again with each GP only having an average of <10 ME/CFS patients on their list we probably shouldn't look to GPs as being...
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    Fundraising for ME/CFS research - opportunities, problems

    1. Not to any great degree, there is: The epidemiology of chronic fatigue in San Francisco from which: "CFS- and ICF-like illnesses were most prevalent among women and persons with annual household incomes below $40,000, and least prevalent among Asians. The prevalence of CFS-like illness was...
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    Fundraising for ME/CFS research - opportunities, problems

    That obviously hasn't helped - in comparison many specialisms actively encourage patients to become involved in patient orgs and carry literature from orgs. However the annual numbers seen by the CFS clinics is small relative to the incident levels that would be needed to meet a patient...
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    Fundraising for ME/CFS research - opportunities, problems

    Bequests/legacies are a key target for building long term stability in a charity - as distinct from year to year survival from one off donations or subscriptions. Whether there are particular disadvantages for ME/CFS to attract bequests I'm not sure, again this come down to what the comparators...
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    Fundraising for ME/CFS research - opportunities, problems

    To make sense of that though we need to have an understanding of any chosen comparators - when it comes to fund raising for medical research, size matters: The 5 Most Influential Medical Research Charities in the UK setting aside Welcome, the other four are 'disease named' and wield huge public...
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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

    There are specified exemptions in the Act: Part II Exempt information My guess is that in this case the Charity Commission (CC) is relying on Section 36 for an explanation of which: "The section 36 exemption applies only to information that falls outside the scope of section 35. It applies...
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    Reanalysis of STAR*D trial (PACE-like outcome switching scandal)

    Wikipedia t:ldr for the original paper https://en.wikipedia.org/wiki/STAR*D
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    Review Exercise is the Most Important Medicine for COVID-19, 2023, Torres et al

    Exerkines in health, resilience and disease (open) Abstract "The health benefits of exercise are well-recognized and are observed across multiple organ systems. These beneficial effects enhance overall resilience, healthspan and longevity. The molecular mechanisms that underlie the beneficial...
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    USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

    Rebrand is just crass, - "Condition X " anybody ? And 'worldwide' where the world is that of the Baseball World Series - somehow never bigger than North America ?
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    Opinion Blockchain in Healthcare Systems: An Industry Prospective Study (focuses on CFS), 2023, Ranjan

    Looks like the key jargon is: “Healthcare 1.0” to “Healthcare 4.0” for more of which Health Care 4.0: A vision for smart and connected health care 1. Introduction Worldwide, we have seen growing interest in engineering approaches to health care delivery in a context of rapid development in...
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    LiveScience article: Strange, two-faced brain cells confirmed to exist, and they may play a role in schizophrenia

    Caveat - In Mice ! "We find that CCK&Dlx5/6 driven expression overlaps heavily with PV expression in GABAergic interneurons in mouse hippocampus and neocortex. We extend this finding to monkey hippocampus and find PV/CCK co-expression. For most of our subsequent work, we focus on the mouse...
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