This is so unrealistic. Who wrote this stuff. What if you can't afford to move somewhere nicer.
Well done with getting it all the way to publication. I think it's a very valuable resource.
I thought cancer fatigue didn't involve PEM or other ME/CFS symptoms, that it really is the symptom fatigue on its own.
Why would spending a lot of time horizontal affect what happens in terms of blood pooling when standing up, apart from the initial adjustment...
Not any that have made their presence public, I think. Edit: I mean I'm not aware of any, public or privately.
Charity number: 1193035, registered in the UK. https://bacme.info/
That's good. So which charity are they talking about?
Fantastic, thank you so much, @PhysiosforME
That was my worry too. There does seem to be something going badly wrong with the MEA.
Are you aware of or in touch with people researching the Visible app that uses HR and HRV monitoring as well as symptoms and FUNCAP? I'm not up to...
Anything from the MEA on this? There should be someone official explaining to the producers how harmful this is.
Thanks for the replies. Your work on all this looks important. Are you planning to publish anything soon about your plans for a package of...
You could also link them to this thread.
In situations like this, I think far better to provide links to people with expertise rather than risking getting facts wrong.
Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot
There have been some newspaper articles about bad treatment in hospitals. Also suggest they contact Dr Charles Shepherd and Dr Nigel Speight at...
@MelbME, are you planning to use any cognitive testing as part of your outcome assessments?
@sarahtyson, in the hope that you are continuing to read and take notice of comments on this thread, I would like to draw the attention of your...
I'm liking very much your development of ways to track changes and potential for use as outcome measures. I like the mix of the three aspects,...
That is extremely concerning. I can't imagine the MEA, AfME or MEAction being so stupid. Even if they can find a member with ME/CFS who can run,...
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