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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...

Like it.

I think we’ve got a pretty good idea of what it will say, based on what’s come out so far. Whether it impacts on people with ME, we obviously don’t know yet. What is clear is that it had a big impact on the department of health and social care. A large number of people with ME have put an...

It would be easy to miss in this article that both AfME and the MEA oppose CBT and GET, contributed to the 2021 NICE guidelines and have worked to help those being abused by the medical system.and . AME in particular played a big role in setting up the DoHSC review that has changed minds at that...

I don’t know anything about the subject area, but this looks important for three reasons: – The European Research Council is presumably something quite important. – And “advanced Grant” seems like a higher level of Grant than the usual one. – the recipient is the managing director of the Max...

My experience with modafinil is that it did help with fatigue (presumably the reason it was being trialled for MS). But it pushed me to doing more than my body could handle, though I did enjoy a few good weeks on it. Before I crashed, the biggest problem was that it would interfere with my...

Many years ago, when modafinil first came out, my consultant was running a trial using it for MS. He asked me if I wanted to try it, and I decided it was worth a go despite the potential drawbacks. It gave me a lot more Mental energy in particular. Eventually, it led to relapse. Several years...

I guess a lot depends on the number and quality of speakers, but this series of workshop seems like a big step forward and well thought through. Thanks to everyone if you help bring these about. Sounds like the department of health and social care played a leading role?

Turns out it is a twin study and was posted here by Chris Ponting in 2019 https://www.s4me.info/threads/repurposing-large-health-insurance-claims-data-to-estimate-genetic-and-environmental-contributions-in-560-phenotypes-2019-lakhani-et-al.7675/ I probably commented it on it at the time, but...

I remember a large US insurance study from a few years back - not sure if it wsa this one - but it had a low sex ratio and CFS incidence was highest in the over 60s, making that study look suspect.

This is good news, and exactly what we need. With GWAS studies, size makes a big difference, and it’s fairly easy to combine the results of different studies to get more robust results. Separately, it’s also important to validate/replicate findings from one study in a separate, independent...

I'm not up pon LC research, but I wonder about the relevance of this to ME, or even most LC. It only looks at people hospitalised with Covid, and effectively operationalises LC as anyone with ANY LC symptoms at 3 months, which is pretty broad. The vast majority of people with LC were not...

Hi, Janna, and welcome to the forum. Look forward to reading your blog.

Not to mention ME. 17% of DecodeME participants report their illness began with GF.

Thanks @Hutan , Do you just submit the suggestion or A rationale as well?