united kingdom

  1. Andy

    UK: Video: Disability employment gap - Commons Work and Pensions Committee - 28 April 2021

    "The Commons Work and Pensions Committee is investigating the gap between the employment rates of disabled and non-disabled people and how the Department for Work and Pensions can better support disabled people in the labour market. This evidence session is expected to cover issues around...
  2. Andy

    UK: BBC survey: the experiences of disabled people in the UK during the Covid-19 pandemic

    "How has Covid–19 affected you? @BBCNews wants to hear from deaf & disabled people. What impact has the pandemic had on your health, your disability, your life? Share your experiences with us, it won't take long" https://www.smartsurvey.co.uk/s/BBCDisabilityCovid19/
  3. Sly Saint

    Trial By Error: Why Have Experts in MUS Spent Ten Years Mis-Citing a Study about Costs to the NHS? David Tuller

    https://www.virology.ws/2021/04/23/trial-by-errors-why-have-experts-in-mus-spent-ten-years-mis-citing-a-study-about-costs-to-the-nhs/
  4. Sly Saint

    UK: Exeter - temporary job researching family carers of people with ME/CFS, 2021

    Job advert: https://jobs.exeter.ac.uk/hrpr_webrecruitment/wrd/run/ETREC107GF.open?VACANCY_ID=782145VrC4&WVID=3817591jNg&LANG=USA https://medicine.exeter.ac.uk/people/profile/index.php?web_id=Siobhan_ODwyer
  5. Andy

    A Multidisciplinary NHS COVID-19 Service to Manage Post-COVID-19 Syndrome in the Community, 2021, Parkin et al

    Abstract The National Institute for Health and Care Excellence (NICE) describe “post COVID-19 syndrome” or “Long COVID” as a set of persistent physical, cognitive and/or psychological symptoms that continue for more than 12 weeks after illness and which are not explained by an alternative...
  6. Sly Saint

    UK article: Occupational Health the key to helping employers understand, and support, less well-known conditions

    https://www.personneltoday.com/hr/oh-the-key-to-helping-employers-understand-and-support-less-well-known-conditions/
  7. Suffolkres

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    Moved from this thread It was suggested yesterday that this Member of the House of Lords local to me is joining Forward ME? She has been asking pertinent questions.... Baroness Scott of Needham Market Liberal Democrat To ask Her Majesty's Government why Chronic Fatigue Syndrome (CFS)...
  8. Andy

    UK govt: Open consultation: Women's Health Strategy: Call for Evidence

    Executive summary We are seeking your views to help inform the development of the government’s Women’s Health Strategy. This call for evidence is seeking to collect views on women’s health. It will run for a period of 12 weeks and is open to everyone aged 16 and over. The easiest way to...
  9. Sly Saint

    Medical School Education on Myalgic Encephalomyelitis, 2021, Muirhead,Marsh et al

    Preprint " Abstract Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS is a common complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed...
  10. Andy

    Open UK: Action for ME's list of current research projects recruiting.

    https://www.actionforme.org.uk/research-and-campaigns/research-we-fund/research-you-can-get-involved-with/
  11. rvallee

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I imagine there is supposed to be a point somewhere in there but all I read is people saying if they had been tasked with it they would have done it differently because they don't like the outcome it gave without being there to change it to their preference. No substantial argument other than...
  12. Kitty

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    I found out by accident some time ago that my award has been extended. I needed an up-to-date award letter to renew my Blue Badge, and when they sent it I noticed that the end date was nine months later than it had been. Today I actually got a notification of it. It's happened because they...
  13. Dolphin

    The influence of the biopsychosocial (BPS) view of ME/CFS in government guidelines and medical practice in different countries (past and present)

    This thread has been split from a thread discussing a book about Ron Davis: The Puzzle Solver by Tracie White I've been following ME/CFS research and news and reading forums for over 25 years. I think that the UK has played a much bigger part internationally in psychologising the condition and...
  14. Andy

    United Kingdom: NICE National Institute for Health and Care Excellence

    https://www.nice.org.uk/news/events/5-year-strategy-virtual-event-launch
  15. Andy

    UK: Petition: Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine

    https://www.change.org/p/jvci-specify-me-cfs-on-the-list-of-neurological-conditions-under-group-6-for-uk-covid19-vaccine-and-end-the-postcode-lottery-of-who-gets-vaccinated
  16. Peter T

    United Kingdom: ME Association news

    Copied from this thread The British ME Association are requesting people to send them accounts of their experiences of health and social care as part of a planned campaign looking at good practice and the new NICE guidelines to roll out in ME Awareness Week in May and beyond. See...
  17. John Mac

    BBC: Philippa Day: Benefit errors 'predominant factor' in mum's death

    Not ME but nevertheless... https://www.bbc.co.uk/news/uk-england-nottinghamshire-55826996
  18. Andy

    UK: Public survey to gather views and experiences for the National Strategy of Disabled People, closes 23rd April 2021

    https://www.gov.uk/government/news/citizen-space-survey-national-strategy-for-disabled-people AfME article on this, https://www.actionforme.org.uk/news/national-strategy-for-disabled-people-have-your-say/
  19. rvallee

    Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al

    https://www.sheffield.ac.uk/scharr/research/centres/ctru/mss3 I don't see a thread on this. The list of contributors imply a very expensive price tag for doing copy-paste research that's been done many times before. No idea if ME is an exclusion criteria, very few details. Obviously not a...
  20. Saz94

    UK: Department of Work and Pensions (DWP) medical evidence

    Two questions: (1) Does the DWP accept reports from private consultants as medical evidence? I mean like, will they be snobby about it and not take it seriously if it's not from the NHS? (2) Do they usually contact your GP? I've had very little contact with GP in last few years, and when I...
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