Bristol M.E. Service News

Bristol M.E. Service and the 2021 NICE Guideline

We welcome the publication of the update NICE Guideline, and acknowledge the huge amount of work which has gone in to producing this expanded and updated Guideline. There is a detailed statement about the new Guideline produced by BACME, and our Service fully supports the position which BACME have taken regarding this new advice. You can read the BACME response to the guideline at this web page: https://bacme.info/wp-content/uploads/2022/05/BACME-Press-Statement-NICE-Guideline-publication-Oct-2021.pdf

Bristol M.E. Service and face to face appointments

Video conferencing and telephone appointments were brought in at the start of the Covid-19 pandemic and have continued to be popular with many of our patients. We have continued to offer most of our outpatient appointments by telephone and video calls. Please do not come to the clinic, but make sure that you are available by telephone or video at the time of your appointment. We will call you as close to your appointment time as possible.

If you need to contact us, you may prefer to email us on BristolME@nbt.nhs.uk as our phone can be busy.

We are now able to offer groups using online video conferencing, but we have no plans to offer face-to-face groups at present.

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 M.E./CFS.

The clinical team includes Occupational Therapists, Physiotherapists and Psychologists, 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 our 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

ME/CFS Research

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

We would also like to bring your attention to the Decode ME study run by the ME/CFS Biomedical Partnership, which is a large DNA study aiming to recruit 20,000 participants. To find out more about the study, visit www.decodeme.org.uk/

We have just 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 M.E./CFS or Long COVID you are often unable to get to.

Next year 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: www.IWouldbeHereIfICould.com