DecodeME - UK ME/CFS DNA study underway

https://twitter.com/user/status/1344964666129342465

 

Just a reminder....

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.

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.

 

And I've sent it on.

We now have an updates page, https://www.decodeme.org.uk/updates/

 

Code:

https://twitter.com/DecodeMEstudy/status/1349325346253008902

https://twitter.com/user/status/1349325346253008902

 

Transcript, or at least the first part, of the recent webinar by patient and advocate Anna Redshaw.

https://the-slow-lane.com/2021/01/20/decode-me-winter-webinar-part-1/

 

This is great - George Monbiot provided a link to DecodeME in his article today about Long Covid / ME.

Are sign-ups going up, @Andy?

Edit: Fixed link.

 

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.

 

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.

 

Code:

https://twitter.com/DecodeMEstudy/status/1352564044583071744

https://twitter.com/user/status/1352564044583071744

 

Post weekend update on figures following George Monbiot's article; around 1,000 visits to the website and around 600 new sign ups, which is way above our average, unsurprisingly.

 

This has blog has been sent out via email to those on the list, with the additional info

Code:

https://twitter.com/DecodeMEstudy/status/1354036481057288195

https://twitter.com/user/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.

 

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?

 

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.

 

Code:

https://twitter.com/theslowlane_ME/status/1354433236504600577

https://twitter.com/user/status/1354433236504600577


Direct link to blog, https://the-slow-lane.com/2021/01/27/decodeme-winter-webinar-part-2/

 

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.

 

Covid willing, of course. Will also depend on whether the clinics survive the probable change in the guideline.

 

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.

 

I don't know if it's just in Scotland, but we have a thing called NHS SHARE ( https://www.registerforshare.org/ ) where you can sign up to agree to allow researchers access your anonymised coded data to see if you are suitible for their studies and then you get contacted to ask if you would consider taking part. Might be worth looking into?