I wonder if it would be better at this stages to ask people to describe any relevant experiences before creating a list of potential symptoms to...
I am not sure if this relates to this thread or not, but I sometime get what I call ‘jamais vu’, where I lose my spatial map of the world and any...
Sorry I never remember details unfortunately, but did some autopsy studies from some years back find loss of both grey and white matter in the...
Who knows what it might be taken for in the UK, if ignorance is willing. One thinks of the lady doctor here in the UK who was targeted some years...
This brings to mind Prof Crawley’s earlier study specifically looking at identifying non school attenders to identify undiagnosed ME/CFS then...
Is there also a ‘chicken and egg’ situation, in that the bigger charities do more so people are more aware of them so they get more donations and...
I thought the MEA had 5,000 members but I can’t find the figure again on the MEA website.
I agree that with our present knowledge any trials of any curative treatment for ME/CFS or Long Covid in children should be on hold until after...
It may have been posted here but in case not the MEA are advertising for a part time Communications Office see...
Given I have pushed them to share Neil Riley’s emails to me and insisted that someone else reply, hopefully someone will actually read our email...
This hypothetical re-presentation would not be initially to elicit a response from Cochrane but to be a focus for a wider publicity campaign that...
An impossible amount of work but if we re-present it amongst a media fanfare pointing out they did not even acknowledge the previous presentation,...
I agree that now we should have a go at the first document and see how it works out. Both @Trish and @Sasha have good practical suggestions. Then...
The petition updates collectively constitute a valuable information resource and I was wondering how they could be shared with a wider audience....
Given much about ME has not been scientifically evaluated, and often patients or those supporting them have only general good advice to go on....
One thing I find very useful are our threads on practical issues such as the current one relating to pillows sharing experiences and specific...
Would it make sense for us to try a couple of pieces before deciding the best way forward with the entire project? Certainly we should come up...
As I posted on another thread:
I wish I had a more reliable memory for details, but isn’t wider consultation including with patients part of Cochrane’s policy. In the case of...
Thank you all who prepared and contributed to this update.
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