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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.

Decode ME collected enough to provide DNA for a GWAS analysis and also a rare variant study (whole genome sequencing, WGS). The vast majority of participants gave consent to the rest of their DNA to be analysed by WGS. The problem is it’s very expensive, but the material is there for a very...

Post copied from another thread and subsequent posts moved Decode ME saliva samples were big enough to provide DNA for a GWAS analysis and also a rare variant study (whole genome sequencing, WGS). The vast majority of participants gave consent to the rest of their DNA To be analysed by WGS...

I think this is excellent: piloting through multiple versions, testing on a wide range of severities, covering a broad range of functioning from personal care to more physical and eg concentration, and with no floor or ceiling effects. Fig 1 (below) shows the range of scores across severities...

When DecodeME looked at this, that was the reason we made the choice - plus reducing the burden for patients. That recommendation seems pointless for the reasons you mention, though at least the 2-step method avoids sweeping up everyone.

References from my post: half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses (2); Newton 2010 found similar. One of those was for suspected cases, I'm pretty sure the other was of diagnoses but also see ref that found 48% of GPs were not...