united kingdom

Not sure how long they've been doing this but the ME Association also seem to have had the same idea - https://www.s4me.info/threads/me-association-index-of-published-me-cfs-research.2493/ http://www.meresearch.org.uk/information/research-database/

"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...

"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/

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/

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

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...

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

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)...

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...

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...

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

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...

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...

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...

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

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

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...

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

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/

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...