UK Genome Wide Association Study (GWAS) project: indicate your support and/or willingness to take part and/or join the mailing list

[Andy]

The NEN – North Edinburgh News
Letters: Support the M.E. study


https://nen.press/2020/01/07/letters-support-the-m-e-study/

Hopefully that letter will be seen in a lot of local press, it's been sent out as a press release generally to local news outlets.

ETA: Letter is also here
https://www.bedfordindependent.co.u...-more-research-into-chronic-fatigue-syndrome/

 

[Andy]

A very small example of what differences this project could make. Certainly beats someone sharing the "20 top tips to beat chronic fatigue" type of article with you.

 

[wigglethemouse]

Solve ME/CFS have picked up on it too

Our friends at ME/CFS Biomedical Partnership are planning a genetic variation study! They’ll need lots of volunteers. We’re pleased to support this effort, another step for #bigdata Sign up for the mailing list here: https://mebiomed.org.uk/get-involved/
@actionforme
@mecfsbiobank

https://twitter.com/mecfsbiobank

 

[obeat]

@And

Hopefully that letter will be seen in a lot of local press, it's been sent out as a press release generally to local news outlets.

ETA: Letter is also here
https://www.bedfordindependent.co.u...-more-research-into-chronic-fatigue-syndrome/

Do you have the letter on a file that we can share in N Ireland or has this already been done? We have several contacts in local media we can " coerce" !

 

[Andy]

@And

Do you have the letter on a file that we can share in N Ireland or has this already been done? We have several contacts in local media we can " coerce" !

PM sent to you.

 

[Andy]

In the UK, leading researchers are preparing to submit an application for a large genetic study to two major funding agencies. The project is being led by Professor Chris Ponting of the University of Edinburgh, who is also vice chair of the CFS/ME Research Collaborative, and the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine. I have a lot of respect for both Professor Ponting and Dr Luis Nacul, a clinical associate professor of epidemiology and public health at LSHTM and the co-principal investigator of CureME, the research unit at the university that hosts the biobank.

http://www.virology.ws/2020/01/13/trial-by-error-the-uks-proposed-genetics-study/

 

[MSEsperanza]

Great to have this on Virology Blog to reach a larger audience and get feedback from those who are skeptic or hesitant.

Thank you @dave30th , @Simon M and all involved.

Might also be helpful if someone had the capacities to respond to the comments.

 

[Andy]

7,500 signups! Application goes in tomorrow.

 

[Andy]

Sign-ups now over 7,800!

 

[Joh]

 

[Andy]

Just to clarify, this is the last day to get your support recorded in the funding application. The ability to sign-up to express your interest in participating and/or to receive updates will still be there after today.

 

[ladycatlover]

Urm, I can't remember if I signed up or not. I think I might have done some sort of survey, but not sure. Humble apologies. Is there any way I can find out if I signed up already? Or should I just sign up again? Sorry, brainfogged today and can't think.

 

[Andy]

Urm, I can't remember if I signed up or not. I think I might have done some sort of survey, but not sure. Humble apologies. Is there any way I can find out if I signed up already? Or should I just sign up again? Sorry, brainfogged today and can't think.

Easiest to just try again to be honest, it should stop you from signing up again. https://mebiomed.org.uk/get-involved/

 

[JemPD]

If you follow the link @ladycatlover & click on one of the 'support' buttons, it will come up as 'you have already taken this survey if you signed up already …. lol I know this because I couldn't work out if i'd done it either.

so you don't have to search for it...

https://mebiomed.org.uk/get-involve...Y02eoIFxaAG0NGrUGeRV_EbekixA9E5ixPhX3Tnky9ZB4

 

[ladycatlover]

Easiest to just try again to be honest, it should stop you from signing up again. https://mebiomed.org.uk/get-involved/

Put email addy and Post code in on the link. I think I must have done the survey already as it took me to a survey about current events with a big map of USA so I guess that might be about current political stuff going on there.

 

[Nellie]

I thought I'd signed up but thought I'd check - seems I hadn't... so there is one more.

 

[Andy]

Final figures submitted for @MEbiomed application - an amazing 8,325 sign-ups of support in just 4 weeks. Wow! We are not stopping there - sign-up to stay in touch with our progress and/or express an interest in participating if you have #ME #MECFS

 

[Andy]

Thank you! The ME/CFS Biomedical Partnership team would like to thank all 8,325 of you who have signed up to express support for our proposed genetic study in the last 4 weeks.

Our funding application may have now been submitted but you can still sign up to express interest and receive updates at https://mebiomed.org.uk/get-involved/

https://www.facebook.com/mebiomed/posts/145440950246116

 

[Jonathan Edwards]

Pity these ME patients are so abusive and unco-operative towards researchers.

 

[Andy]

Pity these ME patients are so abusive and unco-operative towards researchers.

I think being able to prove that this isn't the case is just one of the reasons why this project is so valuable - if that number of expressions of support doesn't make a big impression on the funding bodies then I don't know what will.