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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...

Moderator note: This post has been copied and following posts moved from this thread: Epidemiological and clinical factors associated with post-exertional malaise severity in patients with ME/CFS. Ghali et al. 2020 ____________________ PEM studies always catch my attention, especially ones...

You couldn't make it up. Google translation of the captions for the non-scandies: 00:00 - 00: 05So we ask them to sign. Right here. Thanks, you won't get it back. 00:05 - 00: 07This is going to be so good! Think positive. You "do" ME. 00:07 - 00:10 "How much does this cost?" Why do you ask...

Don't think this has been posted yet. I found it very informative. Note: I'm pretty sure this talk was recorded before Prusty's paper was published so may not include the very latest results but this video helped me understand Prusty's thinking around HHV6/HHV7, mitochondria and ME much better...

Only did a quick scroll through but found some interesting verbal gymnastics on slide 52 worth being aware of, in a know your enemy sort of way. Fink clearly knows the common patient objections to BDS and is trying to position BDS as a genuine physical problem, not the patients' fault, and a...

Excellent interview. Obviously primarily focused on covid but both Dr Rahman and Ed Yong mentioned the risk of ME being a possible consequence for some, and the need for both covid long-haulers and pwME to be taken seriously. Both were very clear about how little is known. Ed pointed out that...

Made my day! Thanks to all who helped make this happen. :):thumbsup::angel::trophy@:party::balloons::)

That question occured to me, too. I don't understand their reasoning here. Surely if "CFS is a very heterogeneous condition" it makes no sense at all to add a second confounding condition to the mix. Especially when you're looking at BDNF, a factor implicated in the key symptom of pain in that...

This team has previously said that they're aware their cohort is rather small (lack of funding) but that they believe they can still get worthwhile data from it by using methods employed by rare diseases research where you by definition only have a handful of patients. I don't know what those...

Collating all the evidence against the deconditioning idea into a single coherent argument makes sense, maybe a review article on all the available evidence? It will never convince the hardcore believers but may prevent the next generation going down that same blind alley. Ironically the...

Big bravo to all who made this happen. :thumbup: Curious: did the 4 against and 8 abstentions have anything in common, e.g. from the same country? I imagine follow-up is essential and needs to take the form of specific demands. I hope somebody knows how the system works - I don't - and how to...

Much too technical for my understanding but there do seem to be a few interesting points here (IIRC SS31 was the molecule that had the best effect in the "something in the blood" nano-needle tests). SS31 has no effect on mitochondrial function in young, healthy mitochondria, only on old or sick...

Many pwME prefer push & crash to boom & bust. Not immune to misinterpretation either but at least, unlike boom, push signifies an effort beyond what's easy for you if you're healthy and beyond what's safe for you if you have ME. And it's easy to understand.