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In the repeat CPET study that I took part in, one participant with an ME/CFS diagnosis did not show the characteristic decrease in performance on the second test. That was a bit dispiriting for the person, who, like the rest of us, wanted evidence of illness in the form of some numbers on a...

I read in a tweet that Ed Yong wanted to focus in on the symptom of fatigue for this article, having already done an article on brain fog. 'An anatomy of a symptom' or some phrase like that. So the prominence of fatigue was a deliberate choice, and I think it worked. At the same time, I think...

Not to diminish the enormous losses, but just on the richness or otherwise of personalities: Of course we on the forum don't get to see members "in the round"; we have a limited focus here. But, I feel as though I know the regular posters, and none of them comes across as lacking in...

It is a brilliant article. I'm grateful for it, and I will use it for advocacy. I just wish Ed had not ventured into promoting supplements and other treatments which really do not have evidence to support their utility for ME/CFS: The paragraphs where he speculates about ROS and the like are...

Having listened to the call, the main thing I am left with is the great and increasing gap between the need for care, for treatments for ME/CFS, and the ability of medical systems to provide these things. Dr Cope seemed to accept that, and almost seemed embarrassed by it. Whether she is...

Dr Cope from the CDC started the call This sounded like a genuine acknowledgement of ME/CFS with actions, including work educating school nurses, that seem to go beyond the fobbing off that we have so long been subjected to.

That includes the Chair Stand test, which is what I was thinking of. But it still only requires 5 repetitions. I don't think that's anywhere near enough to pick up fatiguability in well-rested people with mild ME/CFS. Yes. Which is quite a problem for outcome measuring.

True. It's just that I've tried doing the test in my hallway in the past, and it seems such a subjective thing. If the person has a fairly good capacity to walk, it seems that things like motivation or encouragement with some setting of the expectation (or the allowance of breaking into...

Professor Altmann was interviewed on New Zealand national radio. The interview is discussed here: Long Covid in the media and social media 2023 and here News from Aotearoa/New Zealand and the Pacific Islands

Yes, although I don't think a 6 minute walk test is very good for measuring changes in function. Most people willing to participate in a trial where they might be expected to undertake exercise are going to be able to walk for 6 minutes. And, because it's a walk test, there's a ceiling on how...

I understand what you are saying, but I think I disagree. I've seen fine work done at the honours and Masters level. And, although papers are frequently published as a result of the research, the thesis often has a lot more detail and information than the paper. Of course we should give...

Master’s thesis in Clinical Health Science - Pain and Palliative Care Supervisor: Tormod Landmark May 2023 Norwegian University of Science and Technology Tormod Landmark - is there some relationship with Live Landmark? I know this is a Masters thesis, and English is a second language, and we...

As Simon says, I think it's still an important principle that there is not a reliance only on subjective outcomes in unblinded studies. When pain is bad, people can't keep functioning as normal, not on any regular basis. Secondary objective outcomes could include: time spent being sedentary or...

I started out skeptical, but I actually don't mind this review. The main text is a lot better written than the summary quoted above. I mean, I don't think it amounts to much more than what we have done on the forum - looking at the literature and saying 'there's a lot of problems, we can't...

Thanks @Ravn, the podcast sounds good. I'll have to check it out. I thought this poem from the poetry-music link described PEM so well. The Day After Nathalie Gravel (Poem) The day after a good day the hardest of days the light goes out silence returns you’re swallowed back into the darkness...

Thanks for the links Art.

They do repeat CPET tests (in a tiny sample, but still), and find the 20% decrease in workload capacity that is so often found in ME/CFS. And then they fall back onto 'let's exercise them out of this'. How much reinvention of the wheel has to happen before people realise it doesn't work. And...

Maybe that's a research project worth doing? Perhaps ANZMES would fund some work to make a proposal to take to the NZ government? It would be in ANZMES' interest to do that, as it would build links with the Long Covid groups.

Just to be clear, Butler's PACE study was some respiratory-related thing. Surely Butler was aware of the first PACE study, so it's a surprising choice of acronym. The fact that the Royal College of General Practitioners awarded it the Research Paper of the Year in 2020 muddies the water. From...

It's certainly not science. I'm not quite sure what it is, but it doesn't reflect well on the authors. https://www.stephenrollnick.com/ Stephen Rollick