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
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.
I found a link with the same title as the 1st link : https://www.oxfordhealth.nhs.uk/wp-content/uploads/2019/01/Young-Persons-Guide-to-CFS-ME.pdf Link 5 suggests where the information might have moved to but I didn't follow it up : https://web.archive.org/web/20210309124533/http://www.rnhrd.nhs.uk/page/85
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
Is it worth passing this on to the MEA (@Russell Fleming ) given they are seeking to monitor the compliance of UK specialist services with the new NICE guidelines.
(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 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: 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.
