Sly Saint
Senior Member (Voting Rights)
Bristol M.E. Service: Supporting people with M.E./CFS and PVFS across Gloucestershire, Bristol and North Somerset
We have renamed our Service from "Bristol CFS/ME Service" to the "Bristol M.E. Service", in line with the change to the name of the condition (from CFS/ME to M.E./CFS) suggested by the updated NICE Guideline . We recognise that many patients and patient charities prefer the term M.E., which was the original term used in the UK.
https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service
They have yet to update the website where Chronic fatigue syndrome/ME is used .
eg
Chronic Fatigue Syndrome/ME Therapy
https://www.nbt.nhs.uk/our-services...syndromeme-service/chronic-fatigue-syndromemeWe aim to help patients and their doctors to identify the condition, and then offer support to manage it as effectively as possible.
We can help to reduce some of the symptoms using medication and other approaches, but many people face the challenge of living with these ongoing symptoms for some time. We know that CFS/ME can gradually improve in many people, and the service that we offer can increase the likelihood of progress and recovery. We also know that learning ways to manage the condition can help people to make improvements in quality of life. For example, many patients experience a delayed increase in symptoms a day or two after an increase in activity levels. This is known medically as “post-exertional malaise” but it is known to many of our patients as “payback”. This delayed response can make the illness particularly difficult to manage. Through learning self-management skills, people can reduce the likelihood and severity of this “payback”. This can provide a more stable situation which allows some patients to gradually build up important activities.
New section
This is ME
"Developed in partnership with Action for M.E. this new resource aims to help you get the right sort of support from paid carers and other professionals working with you. It could also be adapted for use in employment and educational settings.
It offers a brief explanation of CFS/ME and its impact, and some checklists that you can use to show how CFS/ME affects you, and what helps you to manage this. Our aim is that this will save you time and energy when you get a new carer or other support professional.
We have included a list of common symptoms and space for you to indicate their impact on your:
It also supports you to explain really clearly how you need to manage your activity and your daily routine.
- mobility
- concentration and memory
- hearing and eyesight
- sensitivity to light and noise
- communication
- sleep
- personal care
- diet and medication.
Download this resource:
- PDF version for you to print off and write on
This is ME (PDF version).pdf - Word version for you to edit on your computer
This is ME (Word version).docx
We would love to hear your feedback about how effective this resource has been for you, and any suggestions you have for improving it, including supporting its use in other settings (e.g. employment or education). Action for ME are co-ordinating this feedback, and you can offer them your feedback using this brief questionnaire which is available on their website: www.surveymonkey.co.uk/r/ThisisMEfeedback "
https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/me