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Who is he @Leila and do you know if he has any knowledge of ME? Maybe if you’re a regular follower of his and you can manage it you could message him links to the MEAssociation?

Thanks for sharing your experience @vsou. Unfortunately with the snowball effect that happens around improvement stories and recovery stories. Information about people who have had negative effects and or no improvement often seems to be overlooked and ignored.

Agreed - but still interesting. Timescale he’s talking about seems very short.

Yes I’ve checked the website nothing on there yet.

No published information on the steering group members yet.

I think you’ve written the skeleton of a @dave30th blog.

They keep churning out the tripe.

Oh. @Russell Fleming and what’s the likelihood she would take feedback on the format?

And then there’s Facebook :wtf: Makes me feel so lucky we’ve got S4ME

Well you never know if they’ve got any common sense at all it’s possible that with Long Covid in the news they might have had a lightbulb moment and thought the course might be useful.

Posts about the NHS England announcement about Long Covid clinics have been moved to this thread https://www.s4me.info/threads/uk-nhs-england-online-tool-and-clinics-for-long-covid.15790/

Liaison psychiatry teams all round the country no doubt offering their services....... i hope there’s going to be some some actual testing and medical treatment. Definitely will be interesting to see how this turns out in practice.

I get out of breath very quickly if I have to walk uphill or stairs. I always put it down to being overweight but I can go a lot further on the level without gasping. I think I’ve always been a shallow breather and was absolutely hopeless at cross country running at school - I had to resort to...

Maybe point him to S4ME?

Moderator note: Please be mindful of Rule 12 - No non-ME politics. Posts stating facts about President Trump will be allowed, but please avoid making any comments that could be seen as political. The thread has been reviewed and some breaches have been identified and dealt with.

Thanks @ladycatlover i will do that eventually just don’t have the brain capacity to tackle it until my refurbishment project is finished. There’s so much physical and cognitive energy needed for decision making and moving stuff around in the house. you might need to remind me next summer...

Excellent thread @Snow Leopard. I have things I would love to be spending my time on. I have some milder ME days when I can manage to do a lot more than on my worst moderate ME days. In theory I could do some stuff that would improve my quality of life I’m not even thinking at a wish list...

Seems like minimising any time outside home makes sense in those circumstances. And as for the cruise industry getting going again I’m speechless.

I don’t know the practicalities for arranging the meetings, possibly it is Carol Monaghans office. Five days seems very short notice. Especially if the APPG is relying on PWME to mobilise to get invites out to MPs. Maybe it’s normal for APPGs? Do MPs get notified by an invite from the APPG...

I had gradual onset, I had repeat episodes of laryngitis, swollen glands and flu type symptoms over a period of 3/4 years when my health deteriorated noticeably but not acutely. I continue to have sore throat associated with PEM, swollen glands only occur now when I am at my worst. Since...