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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Contrast and compare: Dr M C Sharpe MRCPsych Clinical Lecturer, Department of Psychiatry, University of Oxford Dr L C Archard PhD Senior Lecturer, Department of Biochemistry, Charing Cross and Westminster Medical School, London Professor J E Banatvala MD Professor of Virology, Department of...
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    Nature: A preoptic neuronal population controls fever and appetite during sickness, 2022, Osterhout et al

    A preoptic neuronal population controls fever and appetite during sickness Osterhout, Kapoor, Eichhorn, Vaughn, Moore, Ding Liu, Lee, DeNardo, Liqun Luo, Xiaowei Zhuan, Dulac Abstract During infection, animals exhibit adaptive changes in physiology and behaviour aimed at increasing...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Crawley (post PACE) has received the largest total amount of NIHR ME/CFS funding (£2,832,750.28), however SMILE itself wasn't supported with NIHR funds.
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    The post PACE NIHR funded ME/CFS studies are listed in this thread: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406747 I don't know if any have been subject to outcome switching. PACE of course was notable for OS, PACE was part funded by NIHR, MRC and the Dept...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    There is some recognition within the NHS and NIHR that it needs to change - a 2017 document pdf = 12 Actions to Support and Apply Research in the NHS from which: "Engaging with patients and charities, we will articulate more clearly what are the NHS’s national and local research priorities...
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    Mental health and alcohol use among patients attending a post-COVID-19 follow-up clinic: a cohort study, 2022, Broughan et al.

    AUDIT-C has been around since 1989 - AUDIT-C for Alcohol Use and is the basis for the current NHS Primary Care questionnaire: Alcohol Questionnaire - NHS AUDIT-C limitations: "AUDIT-C is a 3-item alcohol screen that can help identify persons who are hazardous drinkers or have active alcohol...
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    ME/CFS services in the United Kingdom

    I think in the context it means this: from: Section 10: Using health and social care information –direct care and indirect care purposes "The term ‘indirect care’ is defined as activities that contribute to the overall provision of services to a population as a whole or a group of patients...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Short and unhelpful answer is "no". The difficulty is not so much around "genuine interest and understanding of ME" but what a Neurologist (or any other specialist) is paid to do. If a specialist is not contracted to see ME/CFS patients then they will not be on a referral list and there would...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    The problem I think is not that there would be a change of direction but that a new incumbent would simply not be interested, signaling to Civil Servants and NHS management that the priority for action on ME/CFS is reduced. Just for the record - following yesterday's vote the Government stays...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I'm mindful that politics is not a subject for these forums but for those outside the UK (or those in it for whom the daily news is unbearable) who may not be aware, there is to be a no confidence vote on the UK Prime Minister by his Conservative Party colleagues Ballot win Boris Johnson doesn't...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Great work on getting Ed Davey to write to Kamal - it's important that both Kamal and Javid are the focus of continuing polite questioning -it's quite possible that Kamal would be in post longer than Javid. Re: MRC Fellowship Grants - I can't locate the figures but my recollection is that post...
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    Clarifying the causes of consistent and inconsistent findings in genetics, 2022, Dattani et al

    Clarifying the causes of consistent and inconsistent findings in genetics Saloni Dattani, David M. Howard, Cathryn M. Lewis, Pak C. Sham Abstract As research in genetics has advanced, some findings have been unexpected or shown to be inconsistent between studies or datasets. The reasons these...
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    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Rintatolimod (Ampligen) - a cure in search of a disease. Wikipedia article is comprehensive https://en.wikipedia.org/wiki/Rintatolimod
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    Medical Research Council funding to 2025

    I have edited the first post to note the distinction between the Medical Research Council (MRC) and the National Institute for Heath Research (NIHR) - MRC's funds come under the UKRI umbrella, the NIHR is part of the NHS. UKRI announcement from earlier this year Government announces plans for...
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    Medical Research Council funding to 2025

    UKRI budget allocation confirmed - details in pdf: https://www.ukri.org/wp-content/uploads/2022/05/UKRI-Budget-Allocations-2022-25_FINAL2.pdf figures given in Table 3 for Medical Research Council (MRC) core funding: 21/22 = £563mn, 22/23 =£548mn, 23/24 = £587mn...
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    Is there any research into vaccinations being a trigger for ME/CFS?

    MEA page = We’re collecting information on hepatitis B vaccination and ME/CFS – can you help? | 13 January 2016 which links to the Chief Medical Officer's report: https://meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf and which says: "Immunisations – A few case reports have...
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    Well-known, famous people with fibromyalgia

    Moved post It was like someone had drugged me’ — Kirsty Young on her life-altering illness "The first person to be interviewed by the broadcaster Kirsty Young for Desert Island Discs, back in 2006, was the illustrator Quentin Blake and the last, in 2018, was the neurosurgeon Henry Marsh...
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    Stuart Ritchie, science journalist, articles on science fraud and open science

    Merged thread Science is political - and that's a bad thing, Ritchie, May 2022 From Stuart Ritchie's Science Fictions substack. A long read but covers some topical issues - and nicely ironic from a KCL academic. Science is political - and that's a bad thing audio =...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    Blakemore was tied to PACE from the outset, when he was chair of the MRC he made it his own crusade to increase funding for Psychology - £5 million for PACE was his big win.
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    Exploration of the idea of a register of patient advocates

    With S4ME as the list holder, and where the list is comprised only of S4ME usernames, there would be no additional GDPR concerns, however there would still be questions around a trust relationship between S4ME and researchers. What is it that researchers are getting from what is in effect an...
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