DecodeME - UK ME/CFS DNA study underway

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Just a reminder....
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.
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Could also be helpful with regard to journalists interested in after effects of Covid-19, to make them aware of ME and that some good research going to happen.

Andy said:
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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I realize that things in 2020 didn't go as planned, especially due to the pandemic, so really just a reminder in case it got lost.

Edited for clarity.
 
Transcript, or at least the first part, of the recent webinar by patient and advocate Anna Redshaw.
If, like me, you struggle to process audio (or doing so exacerbates your symptoms) you might benefit from the below transcript of questions and answers from the most recent Decode ME Webinar.

I will share the transcript in four separate blog posts to try to reduce the amount of text to digest. Below is the first 15 minutes, starting with the first question asked.
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https://the-slow-lane.com/2021/01/20/decode-me-winter-webinar-part-1/
 
Sasha said:
This is great - George Monbiot provided a link to DecodeME in his article today about Long Covid / ME.

Are sign-ups going up, @Andy?
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I think something went wonky with your embedded link, the article in question is on the forum here, George Monbiot: UK journalist, writing about ME/CFS and long covid - Guardian article 21/1/21

Other members of the DecodeME team can look at numbers of sign-ups and amount of 'traffic' to the website, so I've asked them to do so for me.
 
Andy said:
I think something went wonky with your embedded link, the article in question is on the forum here, George Monbiot: UK journalist, writing about ME/CFS and long covid - Guardian article 21/1/21

Other members of the DecodeME team can look at numbers of sign-ups and amount of 'traffic' to the website, so I've asked them to do so for me.
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It looks like the article has provided a boost to sign-up figures in the region of several hundreds compared to our daily average. While that might not look much, DecodeME was more mentioned in passing in the context of the whole article, so it's probably not a bad result overall.
 
This has blog has been sent out via email to those on the list, with the additional info
Interest in the study continues to climb, with our total number of UK sign-ups wanting to take part standing at 22,861 as of this morning. This follows a welcome boost brought last week by columnist George Monbiot, who linked to the DecodeME website in his Guardian column on ME and Long Covid.
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Why we need the DecodeME study - new blog. A recent scientific paper, cowritten by DecodeME PI Prof Chris Ponting, explains the need for a huge genetic study on #pwME. Read our full blog on the paper on our website decodeme.org.uk/why-we-need-a-…
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Code: 
https://twitter.com/DecodeMEstudy/status/1354036481057288195



Code: 
https://www.facebook.com/decodeMEstudy/posts/278860783570798



As always, shares and re-tweets gratefully appreciated by the DecodeME team.
 
Only able to skim ATM -- but seems to be a timely email / Tweet/ post. :thumbsup:

Thank you for continuing to keep up to date with how preparation for the DecodeME study is progressing. As promised, we want to continue to share information with you so you know as much about the study as possible ahead of recruitment launching in the spring. Today, we want to highlight why DecodeME is exactly the kind of study that is needed for ME/CFS right now.

A recent scientific paper, cowritten by DecodeME's Professor Chris Ponting, explains that existing ME/CFS genetics studies provide evidence of a genetic link to the illness. However, as of yet we know nothing for certain. This underlines the need for a huge genetic study on people with ME – a study like DecodeME.

In other diseases, similar studies have helped identify disease mechanisms, pointing the way to new treatments, and possibly identifying subgroups. DecodeME might also identify common mechanisms shared with other diseases, and this could lead to using treatments for other illnesses to treat ME/CFS. Finding biological causes for ME/CFS could also change how the disease is seen both by health professionals and society.



Read the blog here

Please stay tuned for further updates. Interest in the study continues to climb, with our total number of UK sign-ups wanting to take part standing at 22,861 as of this morning. This follows a welcome boost brought last week by columnist George Monbiot, who linked to the DecodeME website in his Guardian column on ME and Long Covid.

Best wishes,
The DecodeME Team
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Excellent email!

Mine has some slight odd formatting in that the line spacing increases after the 'Read the blog here' button.

No big deal, obviously, but might be worth keeping it in mind for next time.
 
I'm a bit worried that the numbers have plateaued at or around 20,000 since the initial wave of sign-ups. My understanding is there needs to be significantly more than 20,000 registered due to numbers reducing during screening. Is there a plan to try and ramp this number up?
 
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InitialConditions said:
Is there a plan to try and ramp this number up?
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Simply, yes. There are plans for advertising of various sorts, PR efforts, continued engagement, and the patient community itself can play a big role. Also bear in mind that we are funded for 4 years, so while we would very much like to reach our recruitment target far earlier, we have time to run a lengthy recruitment campaign.
 
InitialConditions said:
Is there a plan to try and ramp this number up?
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Hopefully, being able to enlist the help of GPs and ME/CFS clinics when formal enrolment begins will help to boost the numbers. There must be patients who've never engaged with charities, groups, or online advocacy, or who have done in the past but drifted away because their health declined or they got tired of it. They may be unaware of the project – the fact that several hundred people signed up for further info after George Monbiot's article hints at this too.
 
Andy said:
Covid willing, of course. Will also depend on whether the clinics survive the probable change in the guideline.
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Indeed! I wonder if it would be worth talking to people (if no-one in the team knows already) with a knowledge of how general practice admin works?

For instance, might it be possible for a practice administrator or manager to extract a list of records tagged with ME or CFS from the patient database? If so – or if it might be possible in some practices – it's worth considering whether it'd be allowable to approach them as well as the head of practice. If the latter decides that patients can be notified actively (as opposed to just sticking up a poster in the waiting room), the administrator is likely to be the staff member asked to do the work anyway.

I don't know much about the potential methods of communication or the protocols, to be honest – just that obviously, the more staff members who see the info, the more likely it is that a key individual is reached who's willing to put in a bit more effort because of a personal interest.
 
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