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ANZMES announcement about World ME Day 2024 https://anzmes.org.nz/anzmes-a-globalvoiceforme-on-world-me-day-2024/

Theme for World ME Day 2024: Become a #GlobalVoiceForME - Together, we are battling a global health crisis. https://worldmealliance.org/worldmeday/

More complications: The underlying driver of PEM may in itself be asymptomatic - cue the delay in PEM - until it crosses some threshold of dysregulation where it directly triggers symptoms or indirectly triggers them by setting of some downstream cascade of other stuff going wrong Also, the...

Complications abound We still don't know what PEM is at the mechanistic level. It follows that we don't know how to measure something we don't know what is There are many open questions about the nature of PEM. Are rapid fatiguability and PEF sometimes forms of PEM, on the PEM spectrum so to...

That is one tough nut of a question @Andy. The more I think about it the more I'm struggling to disentangle everything in my mind, there are so many strands to it Because of writing these posts I haven't been able to read this thread yet so I may be repeating what others have said Thoughts in...

Copying my post from the NIH news thread as it's more relevant here

Ah, that link worked. Thanks @wigglethemouse So the Project End Date is 01-May-2024 Which means the data presented in the video is probably close to complete. Has anyone else had a chance to look it?

Background: Good Sorts is a brief segment that runs once a week at the end of our most widely watched TV news programme and always features a warm, fuzzy feel-good story about individuals who do a lot for their communities. Good to see someone with severe ME portrayed in that context. Also good...

None of the links above are working for me but this presentation by Dawai Li looks to be related: “Endogenous Retroviruses and ME/CFS” (starts at 42min) A few bits from memory (so no guarantee for accuracy): they developed new, better method of identifying ERVs presents some unpublished data...

Has anyone watched Jiandi Wan's section (starts 2:28)? I watched a bit mainly because the name was unfamiliar which made me curious. Turns out he presents quite a bit of unpublished data but I struggled to follow it though I gather red blood cell deformability is still or again on the agenda...

Yes, of course fatigue - by whichever name you want to call it - is a huge part of the ME experience. Every time I suggest on some forum that we should drop the terms fatigue/tiredness I get pwME react with 'but I am so so so very very tired!' Yet they also, always, without exception, go on to...

A visual journalist's portrait series of 8 pwME. Unfortunately the text is in image format so can't copy and paste to translate. But the pictures speak for themselves. Some of the quotes describe the limitations ME imposes but mostly they're about dreams for the future. Marie Louise starts...

Those are good points @PeterW I haven't read much of this thread and haven't looked at the NHS page at all so the following are general comments based on general observations in the wider ME community, with my linguist's hat on. We often forget that different contexts require different styles...

Really just introduces the 10 papers published during 2023 as part of the Research Topic 'fatigue' Includes ME and non-ME fatigue), so nothing new. Except for the introduction which is, um, different

I had a quick look at the ALSUntangled website and I like the concept but doubt it would be the best use of scarce resources trying to translate it to ME, at least at the current time. Some elements I like: the lack of credible evidence and risk for many treatments are visible at a glance...

:cry:

Similar pieces also turned up on Newtalk ZB (interview) and in the NZ Doctor (article) I don't know why this is getting so much traction right now. There doesn't seem to be any new paper since this December 2023 one. I suppose they may have chosen to delay the press release for it until after...

In the comments I do admire CF's endurance, forever responding to this never ending stream of BS

Also from the same stable: Acetylcholine mediated vasodilatation in the microcirculation of patients with chronic fatigue syndrome, 2003, Spence et al and Peripheral cholinergic function in humans with chronic fatigue syndrome, Gulf War syndrome and with illness following organophosphate...

Much of the current characterisation of PEM is based on received wisdom, not actual data. So it's very reasonable to put some effort into checking what holds and what, if anything, doesn't. I don't think anybody is suggesting going into that level of detail, that would indeed be pointless. What...