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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...

If you were picking between long covid and an ME diagnosis I think a lot of people would stick with Covid. despite the issues about perception of it being mild in younger people it has the advantage that 100% of the public have actually heard of Covid. How many of the public have ever heard of...

A post from this thread has been moved to a new thread about the ThinkGP programme. https://www.s4me.info/threads/australia-and-new-zealand-me-cfs-medical-education-thinkgp-online-program.17080/#post-260409

Oh well done @Robert 1973. I mean she’s got 96k followers :thumbup:

Well in reality has to be long covid as she doesn’t appear to have enough understanding of ME to be giving an accurate description of it But yes good point.

I can understand why all these people are talking in terms of recovery and rehabilitation because why would they think any different. None of them who were previously healthy including the GPs have any specialist understanding about what it’s like to have a long term post viral illness...

Wouldn’t work in the U.K. how could you train a rat to drive a car with manual gearbox :whistle:

Im absolutely not suggesting there’s any value at all in people diving in to respond on Twitter there are already some good responses. And I did see a tweet a few days ago where Dr Alwan said she wasn’t reading responses on social media as she had had so many.

I’m posting this here and want to flag up that I have messaged ME Association to request that Charles Shepherd asks Nina Muirhead and Paul Garner to try to work with some of these Long Covid advocates possibly doing a seminar so that they at least have a basic understanding of ME. We...

Some posts from this thread have been moved to a new thread Epilepsy and non-epileptic or dissociative seizures (FND?) https://www.s4me.info/threads/epilepsy-and-non-epileptic-or-dissociative-seizures-fnd.17032/

Still busy in retirement then - White P

U.K. independent SAGE (scientific advisory group) have produced a case study on the situation in Sweden A closer look at Sweden’s response to Covid-19 https://www.independentsage.org/a-closer-look-at-swedens-response-to-covid-19/

https://wellcomeopenresearch.org/articles/5-224 Apologies for not copying the text I’m referring to. Under The subheading The perils of pandemic medicine, in the final paragraph of this section the authors state - i paraphrase - that they argue for not being subsumed into other illness...

Good to have confirmation that the guidelines on chronic primary pain don’t apply to PWME. The wording about GET that CoVId patients are not within the scope of the ME guidance is very weasel words fence sitting and will not influence any NHS staff who are determined that GET should be used or...

Sorry if this is a noddy level question @Dx Revision Watch but I’m confused by multiple requests being submitted. Is this simply because of a lack of coordination within the NHS - different organisations submitting requests without checking if others are already addressing the issue. Or is...