This website is in need of updating. The first page isn't too bad but...... Chronic fatigue syndrome (CFS) GET and CBT stuff is still there and then there is this Living with chronic fatigue Even in its mildest form, chronic fatigue can have a significant emotional and financial impact on your life. Source: Action for M.E. https://www.nhsinform.scot/illnesse...yndrome-cfs#treating-chronic-fatigue-syndrome eta: last updated June 2021
Scotland has it's own version of NICE (SIGN), so I don't think we should automatically expect this website to change due to the new guideline.
This case aside, it does bring up the question of what are the plans for disseminating the new guidelines? It seems there are often gaps in communicating updates. At any rate, patient advocates may be busy. I know it's an ongoing task in Canada. I hope the policies and guidelines for Scotland change soon!
"ME - CFS Chronic Fatigue Syndrome Background NICE guidance was last published in 2010 and is due to be updated in 2021. The Scottish Good Practice Reference Guide gives useful background information, but some of its guidance is now outdated. Please also see the 2021 Scottish update on Graded Exercise Therapy (GET) " https://apps.nhslothian.scot/refhelp/InfectiousDiseases/ME-CFS https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/
The website has now been updated and reflects the new NICE guidelines: https://www.nhsinform.scot/illnesse...myelitis-me-and-chronic-fatigue-syndrome-cfs/
Good to see the update, it's pretty good. It says the information is sourced from AfME. I'm not sure that there is any credible evidence to support those statements. I think there might be a link between the menstrual cycle and migraines, but is there any evidence that PEM is more likely at a particular time during the menstrual cycle? If there was, that might be a clue as to what is going on.
I think that statement is back to front ie should be 'Some pwME improve over time, although most dont make a full recovery'
https://www.nhsinform.scot/illnesse...omyelitis-me-and-chronic-fatigue-syndrome-cfs Not happy with this as it implies ME is a psychological illness. The page still lists CBT as a treatment.