A further thought on baseline. If all increases in symptoms following any exertion are counted as PEM, then for many of us, the 'baseline' is...
I don't know whether Sarah Tyson will continue to read this thread, or anyone from the MEA or BACME who is involved in and has some influence on...
I echo Ravn's comment. I spent many hours yesterday at cost to my health to provide detailed feedback. It feels like a kick in the teeth to have...
The conjuction of these two parts of your comment is particularly interesting, highlighting, perhaps that you are unaware of the misuse of...
I had a quick skim through what these were about. Many are paywalled so we can't study them, most are about measuring patients' progress in stroke...
I am disappointed that our efforts to engage are seen as hysterical, hostile and insulting. We all want the same thing, better clinical care. If...
Blimey, so they stop the ME study at 17 pwME and plan on 240 pwLC. At the rate they did the ME study, that should take them another century or so...
I agree. Why ask patients to spend 15 minutes filling in a lengthy questionnaire that tell the clinician nothing about what the patient can and...
Have I understood correctly that Wallitt is in charge of a similar study with people with Long Covid? If so, one part of any complaints should be...
So not in listening mode then. That is such a crass response.
I feel both gratitude to the people with ME/CFS who volunteered and underwent a gruelling set of tests, and sympathy with them for being badly...
My immediate reaction is how can it be used for 'clinical assessment' if the pwME is saying PEM follows very slight exertion, or very strenuous...
Sarah Tyson has replied to my email: As the individual is the focus of this assessment, then the level of activity (mild, mod, severe etc)...
Gupta has been selling this quackery for years. It's very like LP.
We've seen previous studies on this treatment. Epipharyngeal Abrasive Therapy (EAT) Has Potential as a Novel Method for Long COVID Treatment,...
I wasn't suggesting exertion intolerance/fatiguability are unique to ME/CFS. I was responding to the suggestion by @dave30th and others that the...
I disagree. See my previous post. Again, a problem, see my last post. We can't push through every task. Symptoms increase and debility increases...
I'm with @rvallee on this. The stuff about effort preference makes no sense to me. I stop an activity because I can't keep doing it. I also try to...
I have just sent the following feedback by email to Sarah Tyson: Typo spotted after sending corrected here in red.
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