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Page 1 of revised PASS

MEA article: Research: Retesting the Post Activity Symptom Scale (PASS) October 3, 2024 We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) to complete this online questionnaire. People whose ME/CFS...

MEA article: Update on a new All-Party Parliamentary Group (APPG) on ME October 2, 2024 https://meassociation.org.uk/2024/10/update-on-a-new-all-party-parliamentary-group-appg-on-me/ Action for ME and the ME Association are keen to continue providing joint secretariat for a new All-Party...

Recognise ME – Raising Awareness in GP Practices October 2, 2024 https://meassociation.org.uk/2024/10/recognise-me-raising-awareness-in-gp-practices/ More at link. The article includes copies of the posters and leaflets.

I'm not sure what this approach to collecting data will tell us about relevance to ME/CFS, especially if the sample is skewed by encouraging people who already observe reaction to carbs to take part.

That's a good letter.

I think it's important to include severe as well as very severe, as there are many housebound people getting no support from clinicians who understand ME. Access to a specialist nurse to do home visits who reports to a consultant doctor could, I suspect, provide, or arrange provision of, the...

If confirmed that the earth is a lump of meringue floating in shark infested custard, the implications for the airline industry are large.

Wow, that is such a special poem, @Veronica . I am in awe of your ability to place a devastating experience with a doctor in such an unexpected visual setting so it really works perfectly. So much said so tellingly in so few words. :heart:

Why don't they just tell people to read the NICE guideline?

I don't understand the logic of your comment. Fluge and Mella were very clear that there should not be widespread use of Rituximab after their uncontrolled trial looked promising. They insisted that it was important to do their larger controlled blinded trial first. As it turned out they were...

It might be worth asking if there was any chance of an answer. We've asked the same question multiple times. They simply ignore it.

I guess this is what Cochrane calls keeping us updated. Posted on the letters thread:

I haven't seen evidence of this.

Those sound incredibly high percentages of widespread musculoskeletal pain in adolescents. How can it be called widespread if it's mostly neck pain? My inclination seeing a figure like that is to suggest it's not disabling pain, and may be related to posture rather than anything internal.

Back in 1989 my GP diagnosed post viral fatigue and said after 6 months its name changes to ME. I don't think PEM was mentioned back then, but I certainly experienced it.

It reads like a parody of something, not sure what. It deserves the most pompous parsnip award.

What is coherent breathing?

I was thinking of the same as for genetic predisposition, maybe also environmental predisposition, which might include insecure employment so not being able to rest while sick, dietary deficiencies, mouldy houses. So more from each group end up with ME/CFS first time. There is therefore a...