The replacement of fatigue questionnaires with objective activity measurement as described here seems to me to be the only way to go for ME/CFS...
Hi @Barry, as you see, some of us have been trying this. I too have been getting lots of ads for Visible on FB.
I'm in the process of drafting a possible letter to the MEA about this project and some of our members' concerns about it. The article on this...
Good thoughtful article from someone who is both scientist and patient. This bit rang lots of bells, I hope researchers read it: Quote:...
This sort of home real time record keeping is becoming more common with chronic illnesses. I have very mild asthma, and was invited by my GP...
Good for you. I think everyone fighting this in the best way they can using all avenues open to us is justified in doing so.
I have been thinking about what sort of record keeping and data collection I think would be most helpful to me as a pwME for a specialist service...
First model ward (clinic) for severely affected children and adolescents in Munich is co-funded by the ME/CFS Research Foundation...
The Zoe Covid app had 4.7 million users. I wonder how the 3000 subgroup in this study were selected. If participation was offered to far more than...
I did.
That's a very good well researched article with lots of familiar names quoted.
Which one was that?
The 2-day CPET main finding about differences with health controls on day 2 have been replicated multiple times. I think the details of blood and...
And were the participants who put their health on the line to take part in a pretty gruelling study told in advance that this was Walitt's intention?
It's difficult to say when an individual genuinely wanting to share their happy experience with a treatment tips over into unevidenced claims of...
Whitney Dafoe is another well known example. I'm sure there are others.
Summary of the latest S4ME letter to Cochrane: We mark the fact that it's 6 months since we first wrote to Cochrane and no action has been taken...
The committee has sent a new letter to key people at Cochrane, posted on the letter thread:...
I like the idea of the MEA/AfME/Bell scales because they are short, the person only has to select a single answer, so it's quick and easy to fill...
Moderator note: Please take care in comments about individuals, and avoid speculation about their health, including their diagnosis and their...
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