Search results

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...

It's great to have an assessment on what proportion of people who report a "Chronic Fatigue Syndrome diagnosis" meet ME/CFS criteria. 34% is unsurprising. People might remember a "chroninc fatigue" diagnosis as CFS, bu we also know that around half of GP diagnoses are wrong. I don't think we...

I’m not sure to what extent this finding has been replicated, which gives me some concern. However, I know @chillier has done some analysis of published data that, I believe, is consistent with the finding. Maybe they can comment?

Thanks. Great to know this was done using the Leftover material rather than eating into the 50% remaining from each original sample.

this looks like a very interesting study, and I like the fast timescale. Above all, having such a big cohort allows people to big studies to get robust answers. The Glasgow University page says they need samples and data. Data I understand. As HHV6 is integrated, Presumably the DNA sequences...

yes. The question is, how much has it increased? And there is no good data on long Covid prevalence. Part of the problem is the incredibly broad definition: symptoms persisting or developing 12 weeks after a Covid infection with no alternative explanation . There is no severity threshold, no...

There is: 1. The sex ratio of 3.9 is very high, though not as high as research samples. It's hard to think what else the code is being used for that would have such a high ratio. Depression (1.5-2) and Chronic Fatigue (arond 2) have much lower sex ratios. The US study is clearly bunk: very low...

The estimate of 390,000 from the recent preprint (submitted for publication) by Gemma Samms and Chris Ponting probably gives us the best estimate, IMO. It analysed data for all 100k people with a g93.3 Post viral fatigue sydrome ICD-10 diagnostic code. The based their estimate of 0.6% on the...

ME Assoc: How Many People in the UK have ME/CFS? The MEA is trying to come up with an updated prevalence figure for the UK and is looking for input from PwME. Their website article is above, their Facebook page seems to be the place for comments, though some people might find a forum thread an...

Sorry the blog went down for a while yesterday (not because it was overwhelemed, as far as I know). It's great to see this response to Charlie and Audrey's work, and thanks for the kind words about the blog. And that is why it was such a pleasure talking to you and Audrey. You are going about...

I'm glad it stuck! And being quoted on someone's fridge - years on - makes me very happy. Thank you.

Yes, some positive results would certainly help with funding. As you say, our evidence base is patchy - and the lack of replications is a factor here: there are no shortage of positive results, but a big shortage of positive results that we can believe in. Apparently, Karl Tronstadt, who was the...

Good grief, a new blog. Several small and quite different ME/CFS studies have come up with the same tantalising finding – and now a team of two very talented resarchers, one a patient, are embarking on a robust replication that could help move the whole field forward. The finding? That if you...

I'm not sure how to interpret this estimate of there being 20-30k people out of work due to LC at July 2022. The study has many great aspects: People were recruited from the huge Covid Infectition Study that recruited from randomly selected households and the data we collected propsectively...

That seems very low relative to the size of the 'limited a lot' category, and reports of LC more generally. Do you have a link to the paper? I think LC is also contributing to people working part time, which would also count as 'limited a lot'. We don't, and I agree with the issue of...

I suspect they are too high but getting at prevalence is tricky. Gemma Samms and Chris Ponting published an estimage of 600k edit 390k based on hospital diagnoses of Post Viral Fatigue Syndrome, which is probably the best data we have. They found the highest rate in Cornwall for white people...