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I think it’s very important as perhaps the final nail in the coffin of the deconditioning hypothesis. Inactivity accounted for very little of the differences between people with CFS/ ME and healthy controls. Without having comparable data for psychological illnesses such as depression, it’s...

Thanks for pointing that out. :) It's what they explicitly state and published in the main biggest GET papers is the basis for GET (and the graded exercise approach of FINE). As you say, who knows what they believe. And those statements are a problem for any future attempts to justify GET...

The Pace authors can't do that: they nailed their colours to the deconditioning-causes-symptoms mast. Likewise Fine trial authors. And thanks for the info about the history. I believe the big Edwards big-effect GET trial came directly from the Liverpool pain management approach. Miller is...

Helpfully, the Pace trial spells out the central role of deconditioning in their theory of why GET works. It seems pretty clear that if deconditioning doesn't cause the problems, there is nothing to treat, whatever the method. This is from Panel 1 of the Lancet paper (PDF): Graded exercise...

I’ve spent nearly a year in total living alongside people who must be even more deconditioned than I am because of severe physical difficulties due to eg MS. And yet their illness is nothing like ME, they have better stamina/less fatigability (despite most needing bed rest during the day) and...

You are welcome ;-). ADDED: there was also some great work by a user called biophile (who is well known for some other work he did under his own name). And somewhere, there is a letter from the very much missed Bob (Robert Courtney) in response to one of the Pace papers (Possibly the one on...

If you read the BACME reports for 2019 and 2023, https://bacme.info/library/surveys/Surveys & Research Archives - BACME the biggest complaint of these MDT clinics (alongside Struggling to get funding – or respect from clinical colleagues) is lack of medical input, particularly for diagnosis...

Thanks for all the great analysis (as usual). And yes, I think the Rituximab open label study showed at least as big an effect, while the blinded follow-up showed none. This study is similarly unblinded with no control, only this time with very short duration where significant improvement...

What can we conclude about possible PEM in other illnesses? It looks to me that a significant proportion of people with MS and PPS have symptoms that could be PEM rather than exertion intolerance. ADDED And I think this is very significance, because I don’t think we’ve had any quantitative...

MS has very distinct clinical signs, especially with MRI scans (I don't know about PPS). The prevalence of ME is about 0.5%, yet 29% of people with PPS and 22% with MS report potential PEM symptoms, so the I don't think that's a strong possiblity. I see relapses as separate from PEM. In my...

That’s a very good point for post polio syndrome given that it’s a post-infectious illness. I Wonder if anyone has ever looked at this? I think it’s less likely for MS. Although EBV appears to be an essential step for development MS, it’s not a direct trigger. As with ME/CFS, glandular fever...

Somehow, I missed this paper when it came out, but I think it's important as it deals with the shortcoming of the original DSQ-PEM questions, which also capture simple exertion intolerance. Exertion intolerance is common to many illnesses and those with deconditioning, and one Lenny Jason study...

Thanks for checking.

Do they show the hazard ratio just for G 93.3? It’s the only Code that might be relevant

Yes and – in fact, it’s not a very impressive results versus healthy controls. I hope it will be possible to refine this process. It was the scale of the separation in the nanoneedle results that was so striking.

This is over simplistic, but I think the answer is something like this: Replicated: – about 2/3 of people with ME report they had an infectious onset. – infectious mononucleosis leads to me in a significant minority of people who develop it in their teens/20s. – There is a reduced ventilatory...

That’s really interesting idea and that’s not just for a WGS. Crowd funding is a lot harder than people imagine, but the sums involved would be more doable. Though I don’t know how much fundraising appeal hiring lobbyist and people to write grant apps would have.

It could be £10m for a very large one. Bear in mind it was an enormous battle to win funding for a £3.5m GWAS, but I think it might happen in the medium term, particularly as sequencing prices come down.

Do you are developing an iPhone app?! Seriously impressive, and I don’t recall seeing anyone do that on the Forum before. Thanks. It seems like a great way to extend the tools/research. And above all, to bring people with ME into the process.

Don’t know, Sorry. I know Ian Lipkin applied for a NIH grant for a small GWAS. Not sure if this has been funded. Also, Jarred younger, in his latest video, said he is doing a rare variant/WGS study with Liz Worthy. No mention of sample size, and I don’t recall if he mentioned who was funding work.