UK: Sheffield Children’s Hospital, NHS, CFS/ME clinic

Sly Saint

Sly Saint

Senior Member (Voting Rights)
https://www.sheffieldchildrens.nhs.uk/services/cfs-me/

What does the treatment involve?
  • Routine. Avoiding boom and bust. Young people with CFS/ME say they have good days and bad days. On a good day, they are often very busy (boom), but on the following days, their symptoms seem worse than normal (bust). Having a routine where you do the same things every day helps get rid of these boom and bust feelings.
  • Sleep. Not getting enough sleep can affect how much activity you can do. We work with you to try to help you improve the quality of sleep. This means you are more able to take part in activities.
  • Activity & exercise. Everyone finds it difficult to get back to normal activities when they have been ill for a while. This may be because your muscles have become weak and you may have become unfit. Some people are frightened of making their symptoms worse by doing particular activities. We shall help you put together a plan of how to improve what you can do each day.
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Further information
Young Person’s Guide to CFS/ME (PDF) – a leaflet published by the Royal College of Paediatrics and Child Health.

Chronic Fatigue Syndrome (CFS) – helping your child to get better – a factsheet by the Royal College of Psychiatrists for parents, carers and anyone who works with young people.

Chronic Fatigue Syndrome Information and CFS/ME Our Expert FAQ – information from Great Ormond Street Hospital for Children.

Association of Young People with ME – a UK charity that provides support for children and young people up to 26 who have ME/CFS.

Fatigue management – information about the children’s CFS/ME service at the Royal National Hospital for Rheumatic Diseases including leaflets and links.
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1st link doesn't work
2nd link goes to the Royal College of Psychiatrists info sheet
3rd link page not found
4th link AYME no longer exists link goes to blank page
5th link doesn't seem to work.

this pdf, although not linked to is still available online
 

Attachments

How do these informational pages still exist in the wake of so much contradictory evidence, particularly the existence of the updated NICE guidelines? Is it just the slow mechanisms of a massive bureaucracy? I’m not familiar with typical NHS administrative functions like this, as I’m not in the UK.
 
Sly Saint said:
https://www.sheffieldchildrens.nhs.uk/services/cfs-me/



1st link doesn't work
2nd link goes to the Royal College of Psychiatrists info sheet
3rd link page not found
4th link AYME no longer exists link goes to blank page
5th link doesn't seem to work.

this pdf, although not linked to is still available online
Click to expand...

I have emailed a link to this thread to a trustee at Sheffield ME & Fibromyalgia Group, to bring this to their attention.
I am aware that they are already working with Healthwatch and their ICB to update services to NG206.

https://www.sheffieldmegroup.co.uk/speakup2022
 
(This is the adults service)
Sheffield Health and Social Care
Myalgic
Encephalomyelitis/
Chronic Fatigue Syndrome
(ME/CFS) Service
Information for our service users
South Yorkshire and North Derbyshire

The programme involves
practical activities and doing
things a little differently.
You need to be prepared to
'give it a go' to access this
approach.
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what the actual 'treatment' is is very vague
https://www.shsc.nhs.uk/sites/defau...gue Syndrome (MECFS) Service leaflet - A5.pdf
 
Putting the quote about 'give it a go' in context:

During your treatment programme you will cover topics including:

Understanding ME/CFS
Activity management
Quality rest
Physical stress
Mental/cognitive stress
Emotional stress
Understanding persistent pain
Working with thoughts
Sleep
Nutrition
Communication
Managing flare ups

The programme involves practical activities and doing things a little differently. You need to be prepared to 'give it a go' to access this approach.
Click to expand...

If the 'give it a go' activities are indeed things like learning to practice 'quality rest' and finding ways to cope with stresses, it could be useful and positive. But just saying it that way makes it sound like it could mean anything, including patient blaming narratives about symptoms being caused by wrong thinking etc. It also sounds horribly like pacing up, where you keep 'giving it a go' doing a bit more each week. I hope not.
 
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