united kingdom

China to access NHS medical records of 500,000 patients despite MI5 fears

Full title: Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK Maedeh Mansoubi, Thomas Richards, Martine Ainsworth-Wells, Russell Fleming, Phaedra Leveridge, Charles...

Under-Served Groups and Myalgic Encephalomyelitis Research Workshop; Multiple Barriers to Effective Healthcare, Research and Public Participation Monica Jane Bolton, Carolyn A. Chew-Graham, Harm van Marwijk ABSTRACT Public involvement in research and other initiatives for myalgic...

This post has been copied and responses about the Nuffield program moved from the Paul Garner thread.

Watch this video earlier of a guy talking about his experience of long Covid. It's quite emotional in places. It also makes clear that he's being encouraged to do low-level exercise by an NHS clinic, and he's trying to do it because he so much wants to get better. I think it's really effective...

Long COVID SOS, just published a 7 page GP leaflet with the collaboration of Royal College of GP’s and the Clinical Post COVID Society. https://www.longcovidsos.org/_files/ugd/8bd4fe_2c32c19ec66c4396bbaedae8a42fe167.pdf

from their website Site Map - BACME Primary Fatigue Service (for ME/CFS and Long COVID) South Yorkshire and North Derbyshire ME/CFS Service ME/CFS and Fibromyalgia Service, Royal London Hospital for Integrated Medicine Royal London Hospital for Integrated Medicine: Physiotherapy for...

Warning of 'Victorian disease easily mistaken for a winter cold

Copied post Learn about ME webinar for GPs: watch now October 14, 2024 Dr Nina Muirhead and Dr Robin Kerr led a free Learn about ME webinar for GPs on Thursday 26 September. Continues at: https://www.actionforme.org.uk/news/learn-about-me-webinar-for-gps-watch-now/

benefitsandwork.co.uk has just published a new guide for those claiming PIP for ME/CFS. The full guide is only available to paid members, but the page below gives a flavour of what is in the guide. The linked page also includes some interesting stats on PIP claims by those with a primary...

Ten-minute appointments: It’s not surprising patients have unfinished business with their GP (msn.com)

I've lived in Sussex the whole time I've had ME and I've only just found this. First of all its the old gripe, IE chronic fatigue used instead of chronic fatigue syndrome. I'm part way through watching the video and again its entitled living with chronic fatigue. Interesting that they say...

Abstract Long covid (persistent COVID-19) is a new disease with contested aetiology and variable prognosis. We report a 2-year ethnography of UK long covid clinics. Using a preformative lens, we show that multidisciplinary teams (MDTs) built working knowledge based on shared practices, mutual...

A year ago, @Arvo made this interesting post on the Research Funding thread. There is the question of why there is an MRC file on ME that is redacted until 2071. Is this accurate? Is there any mechanism to find out why the file is not available? And also the question of MRC Board members. Is...

From the #MEAction website: Questions to Ask Prospective MPs About ME/CFS https://www.meaction.net/2024/06/04/questions-to-ask-prospective-mps-about-me-cfs/

Programme on fabricated or induced illness (FII) on at 11:00 am UK time. Will be on website and app after broadcast. Trailer suggests includes reference to children with ME. https://www.bbc.co.uk/programmes/m00050jw

This thread is for a list of sub-national UK ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. Chester MESH self help group Leeds ME Network ME North East Norfolk and Suffolk ME Patient/Carer...

Copied post From: Dr. Marc-Alexander Fluks Source: British Association of Clinicians in ME/CFS (BACME) Date: October 23, 2023 URL: https://bacme.info BACME 2023 National Services Survey Report ------------------------------------------ The BACME team are pleased to announce publication of...

Abstract Purpose The complexity of long COVID and its diverse symptom profile contributes to unprecedented challenges for patients, clinicians, and healthcare services. The threat of long COVID remains ignored by Governments, the media and public health messaging, and patients’ experiences must...