DecodeME - UK ME/CFS DNA study underway

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Have just remembered – :banghead:! – that my local MP has been appointed the shadow minister for health and social care. He has a good record for engaging with constituents, so I could email him with information about the study in the hope that he can help with publicising it via (for instance) NHS services.

I'd need a bit of help, though. One thing that would be useful is a simple timeline, which includes plans/timings for getting NHS ME clinics and GP practices involved.

Also happy to hold back for the time being, if people think it would be worth waiting until we get to the next phase of the project.
 
Kitty said:
Have just remembered – :banghead:! – that my local MP has been appointed the shadow minister for health and social care. He has a good record for engaging with constituents, so I could email him with information about the study in the hope that he can help with publicising it via (for instance) NHS services.

I'd need a bit of help, though. One thing that would be useful is a simple timeline, which includes plans/timings for getting NHS ME clinics and GP practices involved.

Also happy to hold back for the time being, if people think it would be worth waiting until we get to the next phase of the project.
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We are still working on a lot of the detail and will be until we open recruitment in March 2021, so might be worth waiting for the moment. Alternatively, starting the conversation with him now could be useful - perhaps an email pointing the study out to him, stressing how important you feel it is and asking him what support he will be able to give to it?
 
Andy said:
We are still working on a lot of the detail and will be until we open recruitment in March 2021, so might be worth waiting for the moment. Alternatively, starting the conversation with him now could be useful - perhaps an email pointing the study out to him, stressing how important you feel it is and asking him what support he will be able to give to it?
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Thank you – as he's a fairly recent appointment and probably still getting to grips with the brief, it might be best to keep our powder dry. Provided he stays in post, I could contact him in early February and give him the heads-up so he can be ready to say something about it.

It's possible he's already aware, of course, if he knows someone with ME; but I suspect news of the study hasn't yet made a big impact beyond patients and their immediate circles of family & friends, as there's so much else going on.

I'll put a note in my calendar to remind me. :emoji_thumbsup:
 
After decades of neglect by federal research agencies, the National Institutes of Health has increased funding for biomedical research into ME/CFS, although the amount is still far from adequate. Attitudes toward the illness in the U.K. appear to be changing as well, with government agencies recently appropriating 3.2 million pounds for a genetics study called DecodeME. While less than the amount spent on the PACE trial, this investment still represents a major acknowledgement that the search for answers has switched gears. These welcome research efforts could also shed light on the pathophysiological processes involved in post-Covid syndrome.
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Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome: David Tuller and Steven Lubet July 21, 2020
 
At the CMRC 2020 conference Kristian Spreckley of the UK Biobank talked about their history and capabilities and how they will facilitate the UK DecodeME project. This was in March, before the award of the project and the project had it's current name.

I enjoyed watching it, not too technical, and I grasped how the DecodeME team cleverly utilise existing infrastructure to make their project happen. There really has been an awful lot of planning up front on this project.

Code: 
https://youtu.be/eOMXWIivkRI
 
Thank you for the update, @Andy .

Some suggestions:

It would be extremely helpful for me to have a (very) short text on the DecodeME website that could be copied and used as template for an e-mail asking friends and family to circulate the call for getting involved in the study / declaring interest in participation.

I'm thinking of an e-mail text that can be easily forwarded without needing introductory remarks or any additional explanation.

Also, a printable leaflet for download would be nice.

And how about a "DecodeME in the news" section on the website?
 
MSEsperanza said:
It would be extremely helpful for me to have a (very) short text on the DecodeME website that could be copied and used as template for an e-mail asking friends and family to circulate the call for getting involved in the study / declaring interest in participation.

I'm thinking of an e-mail text that can be easily forwarded without needing introductory remarks or any additional explanation.

Also, a printable leaflet for download would be nice.
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I agree, once the design assets are ready, it will be easier to circulate the news outside of social media or personal contacts. In situations where I can't just forward a digital link, I don't want to use my own wording – it has to be considered so carefully, and I think it would be better to wait for the project materials to be produced.
 
MSEsperanza said:
Thank you for the update, @Andy .

Some suggestions:

It would be extremely helpful for me to have a (very) short text on the DecodeME website that could be copied and used as template for an e-mail asking friends and family to circulate the call for getting involved in the study / declaring interest in participation.

I'm thinking of an e-mail text that can be easily forwarded without needing introductory remarks or any additional explanation.

Also, a printable leaflet for download would be nice.

And how about a "DecodeME in the news" section on the website?
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Thanks for the suggestions, I'll pass them on.

The MEA has a leaflet about the study that can be downloaded via this page, https://meassociation.org.uk/2020/07/free-leaflet-decodeme-the-largest-ever-genetics-study/, or directly from https://meassociation.org.uk/wp-con...st-Ever-Genetics-Study-Launched-July-2020.pdf, which might be the sort of thing you are thinking of.

And in regard to a "DecodeME in the news" section - the study doesn't officially start until September, so is not yet in receipt of any funds, so all the current efforts are actually done voluntarily or before any moneys can be paid to anybody, so I believe our intention is to have a more regularly updated section along the lines of "In the news" as you suggest once we actually have someone in a paid position to be able to do it.
 
It would be great to have a template letter patients could send to their GP practice. There are notice boards up at the surgery for A4 posters. Additionally, given the Covid-19 problems, I would be happy to ask them to put it in their electronic news letter when the research is in the recruitment phase.
 
Andy said:
the study doesn't officially start until September, so is not yet in receipt of any funds, so all the current efforts are actually done voluntarily or before any moneys can be paid to anybody, so I believe our intention is to have a more regularly updated section along the lines of "In the news" as you suggest once we actually have someone in a paid position to be able to do it.
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It's amazing what you've achieved already with voluntary work only, in particular the splendid website. Again, thanks to all involved.

All my suggestions are for the time when your team will have the resources to consider them.

Another one of that category, for the website:

In the "About Us" section I would find it helpful to have links added to the mentioned institutions/ organizations; if possible, also links added to the logos of the involved organizations on the main page (a partnership between....) -- so that the logos are clickable.
 
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