united kingdom

"The ME Local Network (MELN) has been created and is being steered by local ME support groups across the UK, [...]. The aims of this network include strengthening mutual help between local support groups, sharing information and best practice, ensuring the grassroots voice is heard and feeding...

Moved post Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS) Home Our services Find a service (A-Z) Children and young people's services Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS) Living...

FT This was being discussed on Newsnight last night and I was a bit concerned that they were pinning 'economic inactivity' largely on those with LTC. https://www.ft.com/content/c333a6d8-0a56-488c-aeb8-eeb1c05a34d2 although this report would seem to say otherwise (at least for those aged...

Abstract Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack...

https://www.thetimes.co.uk/article/hospital-has-left-my-daughter-in-me-agony-claims-mother-3kvrdzwjl Hospital has left my daughter in ME agony, claims mother July 17 2022, 12.01am Ella Copley with her mother, Joanne McKee, before her illness Ella Copley, 17, from Tingley, West Yorkshire, has...

came across this from Jan 2022 Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (or encephalopathy) (ME) Service A Prior Information Notice by NHS HAMPSHIRE, SOUTHAMPTON AND ISLE OF WIGHT CCG type Contract (Services) Duration 4 year Value £1M...

Moved posts ME Association - "Bedfordshire Chronic Fatigue Service and the new NICE guideline – feedback required" https://meassociation.org.uk/2021/11/bedfordshire-chronic-fatigue-service-and-the-new-nice-guideline-feedback-required/ Reporting about this sly bit of rebranding...

Moved posts

My Local Clinic still haven't updated their website.

NHS South Tyneside and Sunderland the website does not appear to have been updated at all: still links to the 2007 guideline and https://www.stsft.nhs.uk/services/chronic-fatigue-syndrome

Chronic Fatigue Syndrome in Children JCG0051 v3.1 Joint Trust Guideline for: the Management of: CFS/ME in Children and Young People Author/s: Dr Aravind Shastri Author/s title: Service Director Approved by: CGAP Date approved: 03/06/2022 the following is hardly visible on the web page due to...

Humber teaching hospital service is under Adult Mental Health Services Chronic Fatigue Syndrome Service (CFS) The Team provides a multi-disciplinary service for adult patients with a diagnosis of Chronic Fatigue Syndrome (CFS). No mention of ME anywhere, nor the NICE guidelines...

Royal Free Hospital https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/chronic-fatigue-syndrome-treatment/ recommended reading still Fatigue Overcoming chronic fatigue: a self-help guide using cognitive behavioural techniques (Mary Burgess and Trudie Chalder) Coping better...

Chronic Fatigue Syndrome (CFS) / Myalgic Encephalopathy (ME) and Physiotherapy: Information leaflet pdf link here...

Mod note: This thread was previously specifically for the UK Attitudes and Education Working Group, one of three groups in the government's ME/CFS Delivery Plan. The other groups are the (UKCRC) Research Working Group and the Living With ME working group. There is also a Task and Finish Group...

Programme Schedule: https://babcp2022.org/wp-content/uploads/2022/05/Programme-ScheduleFriday.pdf

Mod note: There are three groups in the UK government's ME/CFS Delivery Plan of which the Research Working Group is one. The other two groups, and the Delivery Plan as a whole are discussed on this thread: UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group...

Moved from the Long Covid in the media thread Book review of The Long Covid Self-Help Guide. Practical Ways To Manage Symptoms by Trish Greenhalgh "The combination of these and other symptoms, along with the fluctuating course (good days interspersed with bad days, and certain activities...

Statement My Rt Hon Friend the Secretary of State for Health and Social Care (Sajid Javid) has made the following written statement: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) affects the lives of children and adults across the country. It can be an incredibly disabling...

Full title: Does pre-infection stress increase the risk of long COVID? Longitudinal associations between adversity worries and experiences in the month prior to COVID-19 infection and the development of long COVID and specific long COVID symptoms Abstract Background Long COVID is increasingly...