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It’s useful to know that a symptom is not a one off so it’s a step up from an individual account. Obviously large scale surveys such as Action for ME/ME Association in the U.K. with thousands of participants have more use as evidence of issues being widespread.

Looks like the total respondents = 41

I know some people have these tremors regularly. I have only had them a handful of times. I had a realisation that I was visiting friends in Provence my neuropathic pain was aggravated by heat so I took pregabalin for a couple of weeks which I don’t normally take. I checked the side effects...

I would cope very well with hibernation.

Yes a lot to be said for trying to tailor your message to the audience @Colin

Yes I was asked about this at a family do by someone 80 a couple of years ago. And I said a more colloquial version of this. When I mentioned it’s like having the flu a lot it really hit home

:hug::hug:

Thanks team :hug::thumbup:

Puerile titles r us

I hope Carol Monaghan and/or one of the others from the APPG on ME will speak

I think the inventors Lightning, Reverse, Mikel, Gupta, and the other multi level scam “therapies” best you to it as some of those they hook into their marketing scams are supposedly people who had ME

Thank you @PhysiosforME

:thumbup:Nice one @Karen Kirke

Agree @Barry the NICE guidelines manual makes it clear that different types of response will be received and that all points should be considered https://www.nice.org.uk/process/pmg6/chapter/the-consultation-process-and-dealing-with-stakeholder-comments

Ugh

A number of posts about the Warwick University REGAIN trial of exercise and psychological support for people who have had Covid 19 have been moved to a new thread...

I think a lot of us realise a change to the NICE guidelines isn’t going to of itself result in some kind of root and branch overhaul of how people with ME are dealt with or not dealt with by the NHS @Suffolkres. It is about removing that particular excuse for not changing the status quo. Other...