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They seem to have cottoned on to the idea that PEM isn't just fatigue. Ratings of fatigue were actually flat during period prior to, during and after PEM. CPET - lower max VO2, lower anaerobic threshold. Only 8 people with ME/CFS did it. There was a really dramatic illustration showing the...

Or, if it relates to preference, it's because the hard task has been made easier. Which is exactly what we are going on about - you can't accurately measure effort preference if one group has to, on average, work a lot harder than the other to physically complete the hard task. Their...

The participants were asked how fatigued they were, on a visual scale, presumably from 1 to 10. ME/CFS groups had higher fatigue at baseline, but didn't report tiring faster. The change in the reported fatigue was the same in both groups. Which is hardly surprising under those circumstances...

Hallett is making it sound very definitive that there is no peripheral fatigue - although there was some evidence of 'disuse atrophy' (and yet the maximal voluntary contraction was the same?) I don't think the Dimitriv slope index, the peripheral testing is that definitive. Although I don't...

Effort preference - an extremely junior presenter and he just read the presentation out, looking at the notes the whole time. Virtually no eye contact. He didn't even look up at the end! There was a picture of a woman holding multiple shopping bags to illustrate effort Effort preference isn't...

No difference between groups in maximum voluntary contraction, but ME/CFS couldn't sustain a grip force at half max voluntary contraction. There was a very brief discussion on the suggested finding that the muscles still had the potential to perform, but they weren't. Suggestion that the brain...

I missed the beginning. Is it worth elaborating on what was said?

Just on the set up of the event - there are very few people in the audience. I haven't had a good look, but maybe 20? It's a very empty auditorium. Must only be a fraction of the scientists who worked on the project. Lipkin asked a question, as did a couple of patients. 139 participants...

They are now on a break. Some key points from memory were: * inability to convert from IgG to IgM - B cells. Reliance on innate immune system. Suggestion that this could be indicative of a persistent infection * cerebral spinal fluid - they were able to separate the ME/CFS and control groups...

Microbiome - another paper to come on the functional aspects of the various organisms. So, not about the specific taxa, but instead about what the organisms do e.g. produce butyrate

Doesn't look like the effort preferences presenter, Nicholas Madian, is even a staff member. Way to show respect to a whole patient community that you have labelled as having effort preference problems - not.

Agenda:

Yes, it's some sort of magical thinking - sanctioned exercise will somehow fix us in a way that the activity that we have to trade off to do exercise won't. Even when the exercise is something as banal as walking. Graded Activity Therapy was a thing for a while, but I haven't seen much of that...

That's a terrific complaint, it sets out the facts very clearly. Thank you.

Reminder about this. Registration not required for virtual attendance. Start time 1 am Friday in NZ; 11 pm Thursday in Sydney; 2 pm Thursday in UK (I haven't double checked those times, there might be some daylight saving glitch, so just indicative)

Some posts moved to UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024 Prusty is participating in this 2024 conference

I was posting on another thread about how adrenalin can delay or avoid PEM, and I remembered this thread. I posted the following on the other thread, but I think it's interesting to join the dots on this thread.

I've just seen my son with one wax-white hand and one purple hand. The other day, part of my hand was so blue I actually wiped it with a cloth to see if I had touched something that transferred dye to it. But no, it was just blue. I often wake with a numb arm. I can't hold a steering wheel...

Links to the forum threads for those papers: Use of symptom-guided physical activity and exercise rehabilitation for COVID-19 and other postviral conditions 2023 Ladlow et al The abstract of that paper, which is all I can see, does not provide any evidence suggesting physical activity causes...

It's such a leap of logic isn't it? "We made these people exercise once, and they didn't end up incapacitated in bed. Therefore, we should give people like them a programme of repeated exercise, with the aim of fixing the symptoms they complain of." Where is the link between 'exercise' and...