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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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    Exploration of the idea of a register of patient advocates

    There seems to be two defining issues: data protection and inclusion/vetting. Data Protection: The UK General Data Protection Regulation (GDPR) applies to anyone - individuals, organisations, companies - that holds personal data. In the case of individuals there's a...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    It's a matter of how it's done. If DfME have good journalistic contacts, there's no harm in them saying "look at this Parliament event, shame it was buried, any chance of a resurrection ?" That's very different from doing a formal complaint and simply p******g everyone in the news room who'll...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    The BBC's remit doesn't include having to cover "everything" - anyone wanting to complain on that basis will need to get to grips with the Editorial Guidelines starts here> Section 1: The BBC's Editorial Standards The BBC is also not endowed with limitless resources, something its editors will...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    With Parliament based events it's always a matter of luck whether it's a quiet political newsday and the event therefore get lots of attention whatever it is about, or there are competing stories that bury it no matter how significant it might be. The APPG did an excellent job to pull...
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    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Other than The Times I can't see any news org report on Rethinking ME listed in the top 20 results from Google or Bing. There are other things going on in Parliament that are concerning all news organisations far more than just another APPG report, even if that report is supported by the Health...
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    United Kingdom: Science Media Centre (including Fiona Fox)

    I think the phrase "banged to rights" applies and that MEA, AfME and ForwardME should all be encouraged to make complaints to the SMCs Trustees re: the offending chapter.
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    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    The Rethinking ME report is an excellent piece of work, which together with all the background effort to tie in the Health Secretary, NICE and media exposure to a united front with all the main patient organisations is close to being a peerless bit of advocacy. In a different climate, so not a...
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    ME/CFS services in the United Kingdom

    Any rules based system that isn't properly policed will always impact most heavily on the most vulnerable but we have see this in the context of what is happening in the UK where almost every system of social and health support is under immense pressure with the inevitable result that the good...
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    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    Table 1 starts with the unquestioned equation ME/CFS = Neurasthenia, an issue relevant to this current thread: https://www.s4me.info/threads/help-with-advocating.27823/#post-420572
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    Help with Advocating - responding to claims that ME is a psychological illness

    The neurasthenia conflation still alive: https://www.s4me.info/threads/facts-and-myths-about-chronic-fatigue-syndrome-2022-per-fink-et-al-danish-medical-journal-article.27817/#post-420639 see Table 1, first item George Beard - text in Norwegian but I don't think it needs a translation !
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