The ME Association welcomes the 2021 NICE clinical guideline and will be working with the NHS and social care services to improve healthcare in the UK for people with ME/CFS
The ME Association is a national charity providing accurate and timely information, accessible support, topical campaigning, and vital biomedical research to help people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid.
ME/CFS presents as an acute illness – often following an infection – that can then become chronic with a devastating impact on functional ability and quality of life. HCPs have a key role to play in early recognition and diagnosis, ongoing support, symptom and illness management, and in the appropriate provision of secondary care services.
How severe is it?
ME/CFS can cause have greater impact on quality of life and be more disabling than other serious medical conditions e.g., congestive heart failure, multiple sclerosis, and most cancers. 25% of people are severely affected and bedbound. Those very severely affected need 24-hour care and continuous support.
ME/CFS is classified by WHO ICD-11 as a Post-viral Fatigue Syndrome and defined as being a disease of the nervous system. This is accepted by the NHS in each of the devolved countries and by the UK Government. The NHS digital classification system (SNOMED-CT) also recognises this classification and ME/CFS should be recorded as such on patient records.
We hope the 2021 NICE Guideline will mean greater awareness of ME/CFS by HCPs in the NHS and social care. It should mean that anyone who presents with key symptoms receives validation and understanding, a prompt diagnosis, ongoing tailored support, referral to a suitable and local secondary care service, and appropriate help with management.
The Magazine for Healthcare Professionals
Welcome to the first issue of MEE Medical (ME Essential Medical), the ME Association’s new quarterly magazine for healthcare professionals.
It contains all the medical and research features from the latest issue of ME Essential magazine that we think you will be most interested in reading.
Publication of the important NICE clinical guideline – that had been reviewed over 4 years by a committee of experts, clinicians, and lay members, and was subject to extensive stakeholder consultation – was expected on 18 August but was withdrawn by NICE at the last minute.
The new guideline had been widely welcomed by the patient community and provided a totally new framework for health professionals on how to diagnose and manage this medical condition. The latest news can be found on the ME Association website. We hope to see final publication without too much more delay and we will include a summary of it in the next magazine.
In this issue is a new ME Association information leaflet covering the management of hypersensitivities that quite often occur in ME/CFS – including alcohol, light, pain, temperature, and touch.
We hear from Dr Peter Gladwell at the Bristol ME/CFS service about the use of TENS machines for pain relief, selected Q&As from our regular ‘Ask the Doctor’ feature covering questions on fluctuating medical conditions, symptoms, and triggers.
Meet the Scientist has an interview with Dr Mark Zinn, who discusses Central Autonomic Network Disturbance, and we feature an article from Phil Prydderch who describes his experience of having severe ME/CFS.
Dr Charles Shepherd, Hon Medical Adviser, ME Association
Add your details to the mailing list
Sign-up to receive the ME Association’s ME Essential Medical Magazine. It is a free publication that we will send in the post every three months.
We also send a free copy of the MEA Clinical and Research Guide each year after it has been updated. It is an authoritative booklet written by Dr Charles Shepherd and Dr Abhijit Chaudhuri (Consultant Neurologist at Queen's Hospital in Romford).
Please provide a name, profession, and work address using the form below. HCPs can opt-out of these mailings at any time by emailing: firstname.lastname@example.org
Members of the patient community can also use the form below to nominate their HCP to receive these publications.
Clinical & Research Guide – Free for healthcare professionals
CPD Training Module
StudyPRN in association with Dr Nina Muirhead, the CFS/ME Research Collaborative (CMRC) and the ME Association, has produced a FREE online training course.
The course comprises 10 clinical cases that will assess a healthcare professional's knowledge of ME/CFS, including how to recognise key symptoms, diagnose, and manage it.
Completion of the course awards 1-hour of CPD credit.
Doctors with M.E.
Doctors with M.E. is a global professional association for medical practitioners and scientists that brings together leading experts and regional associations.
We aim to represent healthcare professionals who have M.E. and Long Covid. We are the first global professional association, and the first to be established and led by medics and experts who suffer from M.E.
What we can provide:
- Education and training
- Policy and compliance
- Distribution and collaboration
Our mission is to improve patient outcomes worldwide by empowering medics, scientists, industry and policymakers with up-to-date practices and scientific rigour, fostering collaboration between professionals, the industries they serve, patients and the public.
We are Doctors with M.E. and Doctors who stand with M.E.
Join us to take part in our Committees and Working Groups and help sculpt the future of M.E. and Long Covid.
Dialogues of a neglected illness
This is an excellent project supported by the Wellcome Public Engagement Fund. It includes commentary from leading clinical and research experts – including Dr Charles Shepherd from the ME Association – as well as people who live with ME/CFS.
To see more on Dialogues for ME/CFS visit their site here and below are 3 of their videos showing aspects of the illness.