Thanks but don't want to provide the email address I registered with.
But if I haven't got a message yet, I suspect others won't have - might be worth checking if a chunk of people have been missed off.
I just went to look at DecodeME's Twitter account and got a message reading, 'Caution: This account is temporarily restricted. You’re seeing this warning because there has been some unusual activity from this account. Do you still want to view it?'
Is there a problem, @Andy ?
This pandemic would seem to offer a golden, if horrible opportunity to do this. What kind of pre-onset info would be helpful? Can we do anything to get such a study to happen?
Interesting analysis, @Michiel Tack, and well worth doing. I wonder if one issue, at least in the UK, is the BPS proponents' portrayal of PwME as people who issue death threats against researchers. That has been repeatedly in the national press in the UK.
I'd like to hear the views of current...
I would like to see videoconferencing as a standard, presumptive offer to people applying for PIP and ESA. I don't see why disabled people should be dragged across town for a physical ordeal as part of their assessment.
Has this possible study been mentioned - the COVID Human Genetic Effort? It sounds like the sort of thing we would all have wished to have had when we got sick with ME.
https://www.nature.com/articles/d41586-020-02598-6
I really hope that people pay attention to you widely! I'm very concerned that we're going through a mass-ME event with Covid and that a lot of people's health is going to be avoidably and severely damaged in the long term by clinicians' attempts to 'rehabilitate' them out of it.
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