Bristol M.E. Service News

Bristol M.E. Service is a specialist NHS Service for people with ME/CFS which has been offering evidence-based care since 2004.

We offer an outpatient service to people living in Bristol, North Somerset, and Gloucestershire. We can offer a combination of telephone, video and face-to-face contact, and can offer support individually in in groups. Part of our role is to advise and support other Health Care Professionals in the clinical management of people with ME/CFS.

The clinical team includes Occupational Therapists, Physiotherapists, Psychologists and Dietitians, as we offer a multidisciplinary team approach. We do not currently employ a medic as there are no evidence-based medications for ME/CFS which cannot be prescribed by a GP. We maintain close links with other hospital specialties within North Bristol NHS Trust, at United Bristol and Weston Hospital NHS Foundation Trust and Gloucester Royal Hospital.

Find out more about the referral process including the checklist of required blood tests from this web page: https://www.nbt.nhs.uk/clinicians/services-referral/mechronic-fatigue-syndrome-clinicians

New eLearning on Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)

Healthcare professionals, carers and anyone interested in increasing their understanding of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) can now access a new eLearning resource. This e-learning programme has been developed in collaboration with patient groups and the Department of Health and Social Care and aims to enhance knowledge and support for individuals living with ME/CFS.

The training can be viewed by members of the public by following the advice here: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (MECFS) eLearning - elearning for healthcare

ME/CFS Research

The Bristol M.E. Service has ongoing involvement in research, and we have completed recruitment for the GEM Study which is asking how common two genetic diseases are, in adults treated for ME/CFS. If people with Pompe disease or LGMD2A are currently being treated in ME/CFS clinics, we wanted to find a way to identify these people and offer effective treatment. The study was open to all of our patients who had been newly assessed since August 2020 and given a diagnosis of ME/CFS, but recruitment has now closed and we are waiting for results to come back from the laboratory. To find out more about the study, visit https://www.bristol.ac.uk/academic-child-health/research/research/genetics/gemstudy/

In 2024, we published a study exploring the Chalder Fatigue Scale, which is also known as the Chalder Fatigue Questionnaire (CFQ). This is a Patient Reported Outcome Measure (PROM) comprising 11 items designed to measure physical and cognitive fatigue. It is widely used with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). We worked with a number of our patients and found that the measure is currently difficult to understand, and does not relate well to the experiences of people with ME/CFS.

Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population

In 2023, we published a study looking at two patient reported outcome measures which have been commonly used in ME/CFS Service, and you can read the paper which is available from this page: https://www.tandfonline.com/doi/full/10.1080/21641846.2023.2175579?_ga=2.148057655.1043378513.1690194883-1879258931.1690102757

We are promoting the "I Would Be Here If I Could" UK-wide art project

Where would you go if you could? Tell the project about a place that is special to you. A place in the UK that you love, but due to ME/CFS or Long COVID you are often unable to get to.

The plan is for a large mirrorbox will appear at these special places. Visitors entering the box will hear a message left by the person who has chosen that place and are invited to reply by writing a postcard back.

This is an invitation to take part in a UK-wide art project to amplify the absence of people with ME/CFS and Long Covid.

What message will you leave?

To take part visit: About – I Would Be Here If I Could...