Sign up! Your support could help win funding for a game-changing ME/CFS study (Simon M blog)

Sign up! Your support could help win funding for a game-changing ME/CFS study
January 8, 2020 Simon McGrath Comments 0 Comment

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Researchers and patients are about to submit an application to the UK’s two big medical research funders for a 20,000-patient genetic study. The team want people with ME to sign up to show funders that the community backs the study and that large numbers of people are ready to join it.

Your action today could help the world’s largest ME/CFS genetics study win funding – and could make a huge difference for patients, helping to identify biological causes of the illness and unlocking far more UK funding for biomedical research.

On 23rd January, the ME/CFS Biomedical Partnership made up of researchers, people with ME/CFS and carers, will make a grant application to the Medical Research Council and the National Institute for Health Research. The Partnership needs £3.5 million for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS).

The project will be led by Professor Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

A GWAS aims to uncover some of the biological roots of disease. By scanning the whole of human biology and probing small DNA differences among people, a GWAS can help to pinpoint the genetic causes of disease and then can help to guide drug development. This method has helped to identify genes – and the molecular and cellular pathways associated with them – that play a role in diseases such as rheumatoid arthritis and Type II diabetes. (See my blog about the science of GWAS).

Drug development is now under way in numerous diseases because of GWAS. This, and the identification of biomarkers, could happen for ME/CFS too.

Because researchers are looking at small differences, they need to look at DNA data from a lot of people. The ME/CFS study will recruit around 20,000 patients whose DNA will be compared with that of similar numbers of people who do not have the disease. The DNA will be extracted from saliva samples, and the study uses a “spit and post” design, so even people who are bedbound or housebound can take part.

Sign up!​

3 more reasons to back the project
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Read the full blog​

 

I expect many people here have already signed up, but if you like the blog, please share widely. I think the figure is approaching 5k sign-ups. With 2 weeks to go, we could get 10k.

Thanks



https://twitter.com/user/status/1214948284495802388

 

Are there already 5K expressions of support?
In how long?

My guess is that even with 2K at this stage the recruitment task would look pretty feasible.

 

Is the request for expression of support only for people from the UK or not?

 

Expression of support can be from outside of the UK, the important thing is to show the support of the patient population to the study - when/if the study is funded, we will need patients to share the details as far and wide as possible.

Equally, people outside of the UK can also indicate their willingness to take part but, ideally, we will recruit solely from the UK.

 

Initially I was reluctant to sign up as I don't live in the UK. But it actually asks you where you are from, so they will have a breakdown making the data more useful, I imagine.

 

I would love to live in a world where enough was being raised privately for #MEcfs research that even if this were to be turned down by the MRC/NIHR, there would be enough money to pay for it. Unfortunately for a myriad of reasons, not that much is raised privately
https://twitter.com/user/status/1214974718102720512

 

Just short of 4.8k now.

 

Thanks for the blog post likes and thanks for sparing my blushes by not pointing out that I had used a picture of DNA from a parallel universe.

The DNA helix spirals with a clockwise (right-hand) twist, not anticlockwise (as a researcher pointed out to me). It's now correct in the first post, but wrong on the social media posts (think they will pick up the correction in due course). Actually, I think it looks better with a clockwise twist, but maybe that's just my northern hemisphere bias.

 

https://twitter.com/user/status/1216763113271431169


In case the tweet isn’t showing for anyone, the signup total is now just over 6000. That’s pretty impressive. Getting close to 10,000 would be awesome.

 

7,500 people have now signed up to support the study. Thanks, everyone. Still time to join in - closes end of Tuesday 21st, just over 48 hours from now.

https://twitter.com/user/status/1218994336181948416

 

Am I being very impatient @Andy @Simon M ?

Any news from MRC/NIHR?

 

No news yet.
https://www.s4me.info/threads/uk-ge...on-recruitment-plan.12921/page-17#post-240559

 

Thank you!