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The local paper has picked up on it, a rare occurrence as they usually ignore ME but with an added Covid19 twist it seems ME is interesting after all. Otago Daily Times, 3 August 2020 More at link...

Fortunately it seems likely that both were the sort of cases who get infected, recover, but then test positive again months later because their body is shedding inactive bits of virus. So, hopefully, a false alarm (crosses fingers and toes :nailbiting:). But this does worry me and as for the...

Amy Proal interviews Mike VanElzakker about his work, mainly about how neuroimaging works, what it can and cannot do. Also some discussion about their respective views on how ME should be studied and how the brain stem and vagal nerve could be playing a role, and how very different triggers...

While I don't find this hypothesis overly convincing it should be able to be easily tested. Do large numbers of vit D tests on people testing positive for corona and check in with them again 6 months later. If those with good vit D levels recovered quickly and those with deficiencies are...

The answer to the question of when do I use pacing is: always, all the time. I view pacing as a preventative measure, albeit an imperfect one. I'm one of the people who have no early signs of overdoing it. My PEM threshold is "invisible". If I keep going until I get the first hint of an...

We also discussed pacing in this members only thread: https://www.s4me.info/threads/feedback-please-draft-info-sheets-pem-pacing.13712/ This led to a pacing guide based on pwMEs' experiences and is available here: https://m.e.awareness.nz/a-guide-to-pacing-for-pwme @Hutan's shorter pacing...

Interesting study that throws up more questions than it answers. Real pity they didn't retest after a few hours or the next day. I don't think the fact that they found impaired working memory just minutes after the HUT allows for the conclusion that this impairment is due to early PEM. It may...

Trying to figure out the significance of these findings. Basically the paper shows that a lot of people have been exposed to CMV, HHV6 and EBV in the past, and there was no difference between patients and controls. But they did find significantly more patients had active EBV infection. This...

Pain made objectively visible on a scan? J Nucl Med May 1, 2020 vol. 61 no. supplement 1 399 Peter Cipriano1, Daehyun Yoon2, Ian Carroll3, Catherine Curtin4, Vivianne Tawfik5, Yingding Xu6 and Sandip Biswal7...

I'm inclined to agree with @Jonathan Edwards on this (though the language is so dense I couldn't be sure). The article looks at how the terms MUS, Somatisation, FSS, etc are used in the literature and operationalised in research. Conclusion: very inconsistently, basically everybody makes up...

The original translates as "pain in the body" but "evil in the body" is so much more apt! :rofl:

Yes, and it would be farcical if it wasn't so serious. No community transmission (that we know of) but we've had 4 escapees from isolation/quarantine centers now, all caught again within a couple of hours but still. Clearly some people are unable to cope with confinement, despite mental health...

Has anyone ever looked at 'ordinary' corona viruses in ME? We know that severe SARS and MERS can cause ME-like syndromes. What about non-severe, has that ever been looked at? And we know the current SARSCoV2 can cause ME-like symptoms, at least for a few months, even in those not severely...

+1 Used to have issues with hypotension and fainting for decades. That finally stopped once I developed orthostatic tachycardia instead. Leads to fewer bruises but otherwise I don't consider it an improvement. The tachy is worse in PEM.

This is beginning to look like it should be in the diagnostic criteria ;):D Yep, count me in, too. That dry mouth/thirsty feeling is an early PEM feature. Drinking, even electrolytes, only helps briefly. The peeing follows soon after despite no major change in fluid intake. In the scheme of...

Do we know where the ME/CFS Common Data Elements Project is at? Bolding mine to highlight issues discussed in this thread. Good to see someone is thinking about them. I haven't read the full document yet but so far have not seen mention of using the amount of exertion that triggers PEM as a...

Should we have a new thread? We don't seem to be discussing the original study anymore but more generally how PEM could or should be studied. Jason's PEM instrument is better than the CDC one (which isn't really specifically for PEM). But I'm annoyed with him for ignoring me :p. When his team...

Until we get some sort of biomarker for PEM I guess we're stuck with our current best-guess descriptions. Not ideal but still useful, especially the contrasting of PEM against other types of exertion intolerance, e.g. PEM is more than post-exertional fatigue. Exactly! Unfortunately that's...

According to MEpedia:

PEM studies always catch my attention, especially ones that give a very good description of PEM in the introduction like this one does (it also uses an ICC cohort so all patients should by definition experience PEM).We sure need to know much, much more about PEM, how to identify and measure it...