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I think Dr Nath's NIH study of people with ME/CFS might provide a template to try to understand the illness(s) people with the hEDS label actually have. Or possibly try GWAS ---- I think the problem is that there's a rather pointless discussion about labels when the energy should be expended in...

I fully agree with your post, particularly that the criteria should be broad - ME/CFS is not like e.g. diabetes - diseases which have a biomarker to guide cohort selection. However, I , and I'm confident you, draw the line at utterly pointless studies i.e. which provide results which we can have...

Slightly tangenital (as always) but I wouldn't hold out much hope of UK Government research awards learning from the NICE guidelines. E.g. the review of the evidence base found that pretty much all of the studies were low quality - unblinded with subjective outcome criteria (they could e.g. have...

You obviously know way more about this than I do. Yes if they'd even reported that participants hadn't been able to return to work, education +++ then it would have been clear that there was no meaningful improvement.

Yip I think Brian Hughes +++ has been trying to change the norm --- but it seems to persist. Yip --- they shouldn't have been allowed to drop actimetry i.e. unless the funding was withdrawn.

Posts moved from Paul Garner on Long Covid and ME/CFS - BMJ articles and other media. I think the statement that scientists are flawed humans is entirely appropriate. I think the PACE trial was intended to provide reliable evidence i.e. since all of the previous trials were unblinded and used...

Yea it seems slightly weird. From memory the virus which caused "Spanish" flue has been characterised/sequenced - it was isolated from frozen bodies in the (North American) Arctic.

For a professor of infectious diseases, that's a pretty basic mistake i.e. "Spanish" flue was a coronavirus!

A profound thank you for that intervention --- I needn't say it was coherent - you know that. The sooner we get away from defending crap science the better - we can then focus on trialling things that might help to improve the quality of peoples lives; i.e. trialling them in a way that...

I wonder if it would be possible to report it to the professional body i.e. they are Doctors so BMA or whatever the regulatory body is.

True but the fact that the Government agencies, like NIHR, consistently fund low quality research - unblinded trials of psychological interventions, evaluated using subjective outcome criteria (questionnaires), when objective outcome criteria are available [actimetry - FitBit etc.]; needs...

Haven't read the references/link PACE was by far the largest research grant £5million around 2011. Only the recently funded GWAS study (Chris Ponting - £3.5 million) comes close. My impression is that much/most funding has been whittled away on unblinded subjectively assessed trials of...

Yea one of the suggested reasons, i.e. why ME/CFS is underfunded, is that it is poorly understood, so it looses out to better understood diseases. E.g. MS has a biomarker [it was used in the recent study linking MS to Epstein-Barr virus (EBV)]; therefore, you have a well characterised study...

He might also help to merge ME/CFS with Long covid i.e. currently the "big bucks" Government funding is ring fenced for long covid (ME/CFS is out) so Collins might help in terms of inclusion of ME/CFS in the long covid funding. I think Solve have been trying to lobby to get ME/CFS included in...

I'd be interested to know why B12 was prescribed. The reference test was Methyl Malonic Acid, which increases when you're deficient in B12, but even the standard B12 tests should be OK.

The big metabolic studies would have picked up B12 deficiency so it seems that none of the participants had it. Also, B12 deficiency results in pernicious anemia so, if deficiency was relevant, there would be a lot of people presenting with anemia - they're not.

I agree and I'm not aware of any objective evidence that these interventions work - if fact the objective evidence indicates that they don't work e.g. the PACE trial participants didn't return to their previous healthy lives --- return school, hours worked* --- EDIT - I think there's still merit...

Maybe it's the fact that I live a sad life --- but I laughed when I read this. Others, long familiar with psychological interventions, and having seen tragic outcomes, simply dismiss this as nonsense. If these statements were correct, then surely the PACE trial would have seen at least some of...

Only glanced at this but perhaps the the problem is that the Cochrane authors don't care enough to properly assess RoB - or maybe they have a conflict of interest. Either way it questions NICEs collaboration with Cochrane --- might check but I can't recall that the risk of bias was clearly...

I haven't kept up but Jonas Bergquest, Upsala University, Sweden, got an OMF grant to look at Kynurenine. I'm impressed by Jonas/the analytical team he leads, so there are European based researchers who can contribute to ME/CFS research - they need funding - particularly via Horizon Europe...