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So what should we use then? What terminology would be 'acceptable' to researchers? It seems to me that, as per usual, pwME, who after all also have to deal with cognitive issues, are in a bind where we use the words available to us to describe our experience but because the words we use don't...

No, I'm not conflating anything. I feel a sense of energy depletion all the time - and this gets worse the more I do, up to a point where I don't feel the ability to initiate anything else. Sorry if that doesn't make scientific sense but that is how it is for me, and I believe many other people...

I consider myself challenged then. If that were true then why would pacing be so important? I have nothing like what you suggest - if I let myself then I would have numerous initiated tasks that I would then not complete, due to what I can only describe as a lack of energy, however technically...

News in Brief posts for w/c 18th Dec. Facebook: https://www.facebook.com/sci4me/posts/pfbid02QR5u1YKBbj3quiTurz1s2bHW87e7NsE5o8aKb8XMjNPPuQeznWCeBYBF8mnWMbX2l Mastodon: https://med-mastodon.com/@s4me/111635284171929722

Then that shows I don't understand your analogy.

Are we not talking about different things here? I make no claim to be able to define PEM or the other issues that pwME face in terms of what is actually going on biologically, but what I do claim is that I try to explain as clearly and as logically as I can my experience, and what I understand...

Well, I for one don't understand the distinction being made between exertion and energy-consuming activity. Or at least I don't understand the importance of the difference within the context of this discussion. In your examples exertion seems to equate to what I would understand as "use of...

Can get to them via https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

While I don't disagree with your nuance, the issue we have at the moment is that part of the listed PEM complex is fatigue, so we then get PEM defined by many as "fatigue following exertion". This isn't helped by such other aspects from the DSQ as a. Dead, Heavy feeling after starting to...

The issue with that is the "can be immediate" part of "An onset that can be immediate or delayed after the exertional stimulus by hours, days, or even longer".

"PEM and post-exertional fatigue (PEF) Note that post-exertional malaise is not the same as post-exertional fatigue (PEF) as experienced by people who are healthy or deconditioned who undertake exercise outside their normal level of activity, and which may involve a day or two of feeling tired...

No, that probably shouldn't have happened. Even though the team are now holiday until the New Year, please could you send an email to info@decodeme.org.uk, explaining the situation to allow them to investigate? Please don't do anything with the spit kit for the moment. Thanks for highlighting this.

Trying to compile a kind of "where we are with PEM, and investigating it" list, and have this at the moment, fatigue after exertion isn't PEM. We have reduced energy to start with, so it should be an expected response. studies need to look at participants over a longer term - both to establish...

Full title: Social support in low-income women with Fibromyalgia Syndrome from a sub-urban and peri-urban areas of Tenerife (Canary Islands, Spain): a mixed method study Background: Women with Fibromyalgia Syndrome (FMS) can benefit form adequate social support to fight the consequences of...

No, I've not read it as it is paywalled.

Abstract The purpose of this study was to establish if muscle aerobic metabolism is abnormal in chronic fatigue syndrome (CFS). Myoblast cultures from muscle biopsies of 16 patients with CFS and 10 healthy controls were established. Micromethods were used to determine the lactate/pyruvate (L/P)...

Summary We have examined the muscle biopsies of 50 patients who had postviral fatigue syndrome (PFS) for from 1 to 17 years. We found mild to severe atrophy of type II fibres in 39 biopsies, with a mild to moderate excess of lipid. On ultrastructural examination, 35 of these specimens showed...