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:rofl::banghead: Thanks, as bad as I expected.

It might be interesting to try it on a rubbish paper like PACE or the Larun Cochrane review. See if it picks up the flaws. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full

I've just re-read the MEA article introducing this version of the PASS questionnaire, quoted above. This makes it clear, along with the title of the whole project 'clinical asssessment toolkit' that it's not primarily about medical care, it's about 'assessment'. So what I'm seeing here is...

I'm not impressed with those 2 transcripts. I may be missing something, but what's the point?

It occurs to me that use of a questionnaire like this by a therapist is a way of distancing themselves from the realities of the pwME's life. Especially if they are seeing pwME in groups, and not spending time in the group listening to individuals' situations and helping them resolve real life...

You're right on all counts. I reacted in my rush through it yesterday more positively simply because it's an improvement on the on the original version. I think back to the boxes I ticked yesterday just in order to be able to paste the questions here. My answers, though honest, we're...

They could have said all that 100 years ago.

There are still significant problems with this, such as the meaningless question 12 about what level of activity triggers PEM, with no benchmarks for what is strenuous or mild etc, but it's much better than before. At least this time it's about PEM, not muddling together all activity after exertion.

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?