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I think I mentioned it earlier but I don’t think it’s a coincidence in terms of the wider political landscape with a multi year departmental spending review, NHS 10 year health plan and yes the ME/CFS delivery plan all due this summer.

I went down a rabbit hole on Transcription Factors too Text Nature Transcription https://www.nature.com/scitable/definition/transcription-87/ Transcription factors https://www.nature.com/scitable/definition/transcription-factor-167/ Khan Academy Transcription factors...

I’ve recently found the NHS Genomics Education programme website, which includes a lot of resources, but the Bitesize genomics videos such as ‘What is genomics?’ and ‘What is Bioinformatics?’ are good accessible introductions. https://www.genomicseducation.hee.nhs.uk/education/...

I’m a bit late to this discussion and can’t access the full paper but from the “how did we get here” overview and ideas about crossovers with other theories people like @jnmaciuch have it sounds really interesting. Look forward to the talk being available somewhere. Happy to help extracting...

There’s a lot of differing points of view here. And amongst all the proposals, lobbying, charities, researchers… There’s the people I really care about. Patients, us. So I have a quite simple question (although there may not be a simple answer). At this point in time what is the most effective...

To get back to the original question… wasn’t one of the points of DecodeME to get a cohort that can be used again? Many of us gave permission not only for data sharing but to be contacted by other researchers. So at least in the UK shouldn’t the answer to the question how do we select...

I should have realised you would have :) That asynchronous nature I think works really well for me and others. And I’m absolutely sure there’s plenty of people here who would be happy to help give input or trial methods. I’d be interested in if tools like slack or even simpler IM or forums...

I wonder if there’s a way of analysing the records of those who consented as part of DecodeME, in conjunction with this data, to perhaps correct for regional variations in diagnosis or recording practices? Thinking about it that data probably holds the same problems as it depends upon a diagnosis?

Thanks @Trish Good to know. It felt like the intention was good but I got quickly lost. I say this as a child of someone with a PhD in the social sciences! I understand the need for specialist language to be specific or if describing something new, but sometimes (in all fields to be fair) it...

As soon as you say that you are excluding all severe people and probably a lot of moderate. It’s a problem many studies have had, the barriers of entry for people. And something that DecodeME (and the CureME team) did a lot of work to remove, but it was still a lot of work for a lot of patients...

Quite funny given they have accessible tools to be able to listen to the article. But then use language to make it quite inaccessible. While talking about how the perspectives of some are excluded.

Nope. Not a modern well fitted external one. I have a portable air conditioner (so a heat pump) and that is noisy! But I have to have it or I get really bad. So I use ear defenders. But it’s not great and I dream of a proper external system. I’ve previously lived in places with proper external...

Thanks @jnmaciuch :) I’ve added some resources on cytokines and a couple of non-signup/paywalled osmosis resources from youtube for earlier topics. I may play around with layout for the first couple of posts to tidy things up at some point to stop it becoming unwieldy, any recommendations welcome

Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support? Neither alone solves anything, surely it is great news we are finally seeing both come together?

That’s very true. I don’t see harm in a bit of persuasion too though. We need a good story to tell as well as having something to research. There’s a lot of diseases, a lot of people vying for funding…

Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time...

That seems a key point. People working together. Both researchers and charities.

The author seems to see the possibilities and that these tools obviously are and will continue to be used to help push the field forwards but also that a lot of the hyperbole is just that. Which is what I see from a lot of people to be honest, although sadly they get drowned out by loud voices...

I honestly have no idea what it may be. All of this paper looks reasonable and like the best stab we have given the limitations in diagnosis/coding though. Certainly not unreasonable or trying to inflate things as some others have. I’m interested in why you think Cornwall would be best...

Not the really accurate correlation you could do with proper data analysis but if people want a visual look, here’s ONS data from the last Census by region for over 65s https://www.ons.gov.uk/census/maps/choropleth/population/age/resident-age-3a/aged-65-years-and-over And median age...