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How can something be 'a little better but no noticeable change'? If the change isn't noticeable, how do they know it's a little better? That scale that only allows one negative/no change and lots of variations of positive should be illegal. It's not a research instrument, it's the cheats version...

Maybe write to the authors and ask how the figure was calculate. They shouldn't be reporting a figure without the clear source.

Chris Burton Department for Functional Disorders and Psychosomatic Medicine, Aarhus University Hospital, Denmark

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 needed if you get up too quickly?

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 date with what they are doing, but I understand Visible provides a morning score for the coming day based on data.

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 tracking and outcome measures for ME/CFS? This work looks really useful, especially as you will be testing it on patients along with biological testing.

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Opinion: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal - George Monbiot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 the MEA. See this thread: Maeve Boothby O'Neill - articles about her life, death and inquest David Tuller has written about Maeve and the wider...

@MelbME, are you planning to use any cognitive testing as part of your outcome assessments?