united kingdom

Split from NICE ME/CFS guideline - draft published for consultation - 10th November 2020 MEpedia states this on the page about the York Centre for Reviews and Dissemination - looks like Wessely had his sticky fingers all over this, which really shouldn’t surprise us at all... “Professor...

Hi guys now that the long awaited revision of the NICE guidance on ME/CFS is nearing completion (18th August) I thought I'd create a thread to identify studies which have been funded by the Government in the UK. Specifically do they address the draft NICE evidence review findings i.e. that the...

https://domsalisbury.github.io/mecfs/bacme_dysregulation/ I have written more about the emerging theme of a 'dysregulation model of ME/CFS' from members of BACME, and what this might actually mean in practice. Coincidentally, @Sly Saint has today posted about an addition to the BACME website...

Unbelievable..............

"The ME Association is the only M.E. charity involved in the collection of post mortem tissue samples from people diagnosed with the disease in the UK. Our long-term aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for...

"This is an online group for Black and Black-mixed adults living with ME/CFS or Long-Covid in the UK. It is a safe space to share experiences and create community with the aim of improving our wellbeing. The group will be led by our Darren, who will use his skills as a Community Builder to...

"In a follow up to her 2019 blog post, Dr Nina Muirhead discusses a recent surge in clinical interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In 2019, I wrote to the RCP to share my experience of developing a neurological disease with multisystem symptoms following a...

"Main points At 2 May 2021, an estimated 1.0 million people living in private households in the UK (1.6%) were experiencing self-reported long COVID (symptoms persisting for more than four weeks after the first suspected coronavirus (COVID-19) infection that were not explained by something...

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...