united kingdom

Moved post Patients of post viral being taken seriously? Following petition started by patient from Norfolk and Suffolk Service ME and CFS area. Please consider supporting and promoting please. https://petition.parliament.uk/petitions/585780

There is a full paper somewhere out there too. Key points Route out to employment is positive mindset Lack of employment is a character deficit. Maintenance of a positive affect is woven into decisions over sanctions. Occurring in job centres and private provider premises, places of serious...

https://www.rcgpac.org.uk/programme/ speakers include Dr Amy Small Professor Chew-Graham Dr Julia Newton https://www.rcgpac.org.uk/speakers-2021/

2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts in this post, notice of his withdrawal here 2024 AGM, company documents, trustees, historic governance issues discussion starts here ********* This post copied and many subsequent posts moved from United Kingdom: ME...

https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service They have yet to update the website where Chronic fatigue syndrome/ME is used . eg Chronic Fatigue Syndrome/ME Therapy...

I thought it could be of interest to some people here, though I only had a very quick look myself. 172 pages. https://www.journalslibrary.nihr.ac.uk/hta/hta25570#/full-report

"Government discussions with the National Institute for Health and Care Excellence about myalgic encephalomyelitis and chronic fatigue syndrome – Baroness Thornton Oral questions" https://www.theyworkforyou.com/calendar/?d=2021-10-12#cal35881 (don't have any more details)

Abstract Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards...

Highlights • Long Covid is a patient-defined illness which gained legitimacy in online communities. • We analysed long Covid narratives using socio-narratology. • Narrators used literary devices to make sense of illness and persuade their audiences. • A unique feature of many narratives was...

https://thesciencebit.net/2021/08/15/the-new-nice-guideline-for-me-cfs-ten-questions-answered/ This has been posted already, but I thought deserves its own thread. All points I think still essentially apply during the new guideline is paused.

Full title: Long Covid in adults discharged from UK hospitals after Covid-19: A prospective, multicentre cohort study using the ISARIC WHO Clinical Characterisation Protocol Abstract Background This study sought to establish the long-term effects of Covid-19 following hospitalisation. Methods...

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/