UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

Answered this one upthread but I'd add that what might be really useful to us is if we could point to a high level of support through people registering their interest in the study. So if anybody reading this hasen't done this yet, please do so at https://mebiomed.org.uk/get-involved/

 

That will be because you have filled it in, would be my guess. I just checked on my mobile and I could see the survey.

 

Thank you all for this fantastic feedback - keep it coming. I really like the way that the conversations we've been having recently within the Partnership are exactly the ones you've laid out in this thread, but also that there is a flow of ideas and info in both directions. Happy Christmas/New Year everyone.

 

You can also try incognito mode when that happens. It's pretty much the same as using a different computer for all practical matters.

 

Wonder how much notice of the launch of this was given to charities and groups as it’s not being extensively pushed through networks? I wonder if it coming out just as organisations started the Christmas break was not helpful re timing.

will there be more active engagement & co-ordination in the next steps?

 

Spitballing but is there a possibility of a budget here? Because I think standard mailers would still be the best approach. Online works best when you want to filter a specific profile of people but here we have to widen as much as possible instead. Probably very expensive though...

Otherwise there are too many potential outlets and anything going through old media (TV, radio) will get interference from the SMC. The biggest hurdle is that most pwME probably don't pay much attention to those.

But probably a better suggestion would be to ask how the previous successful GWAS projects did. This isn't the first time something like that is being done, though I fear in most cases that official institutions and agencies were involved and in our case they are unlikely to be of much help. NHS would be the obvious first choice but they are not at all capable of handling this, more likely to sabotage things frankly.

At this point the CMRC seems to be the only official institution that is not dominated by BPSers. But I doubt they usually get involved with something like that, expecting the rest of public health institutions to help along.

 

Lots of great ideas from everyone!

Should we be so quick to dismiss celebrities? Some celebrities have said some things about ME that we wouldn't agree with, but that happens all the time. I don't think there's much damage left to be done. And yet celebrities have huge numbers of followers on social media. I think the upside of them tweeting about the study would far outweigh the downside of anything dodgy that they might tweet alongside it.

And by helping to recruit lots of patients, they would be advancing the science that will eventually help us to dismiss unscientific views about it (and perhaps help those particular celebrities to reach a better understanding of ME also).

I think there would also be celebrities without controversial views on ME who could help push the study. Look at Stephen Fry here:

https://twitter.com/user/status/402738215171289088


And he's got 13 million followers! And he's a friend of Hugh Laurie (1.4m followers) and they'll have tons of showbiz friends with massive social media followings themselves...

Basically, I think that any celebrity with a friend or relative with ME would jump at the chance to promote this study if they understood its importance. I think that those of us who know people with a big social media following should ask them for their help.

 

@Andy - thanks very much for all the hard work that you've been putting into this.

If we want patients (and others?) to register on the site, would it be a good idea to have a separate thread with a title that makes that clear? Otherwise, that call to action seems a bit buried.

It would be good if it could be clarified whether we should be getting non-patient supporters to sign up too, or whether that's premature.

 

They got no more notice of this than anyone else as we decided to launch the site and pre-registration option as soon as we could in order to allow for as much engagement as possible before the application for funding is submitted. It's certainly inconvenient for the project that Christmas is occurring at this time of year.

Yes, definitely, although I would highlight the point that you raised above, that Christmas has got in the way of more coordination from the various patient organisations who are involved.

 

Our application for funding will include a marketing budget.

Yes, we are looking to learn all the (good) lessons that previous projects can teach us. The most notable that we are aware of is the GLAD study, https://www.s4me.info/threads/genet...f-depression-anxiety-2019-davies-et-al.12086/, which states that

Obviously, just because the GLAD study was successful with its recruitment gives no guarantee that any other study will be, but it is at least a proof of concept, and also gives examples of ways of engagement that might be useful to us in the future.

 

Yes, I'll get on that at some point.

One of the options of the survey is "I don't have ME/CFS but I support this research", and they can still enter contact details to be kept up-to-date, so I think we would very much like non-patient supporters to sign up.

 

Aha

 

I went to
https://mebiomed.org.uk/get-involved/

and could not find anywhere to click on other than an x after which it said thank you for taking the survey!

 

Facebook ads can be a good way to reach a wider audience, and you can determine who will see this ad, for instance, only people of UK, over the age of 18. It costs a bit of money, but with judicious timing and message, you could recruit outside of the usual circles.

Same with google ads.

 

@Jonathan Edwards – don't you see the window containing the survey?

 

The window does not have any yes or no or paces to click for me @Andy
And I don't have ME/CFS

 

Now I see that you have to scroll down, but there is nothing on the original image to indicate that. The window that comes up shows no options and no instructions

 

Mark Kermode has previously mentioned on his film review radio show that he has known people with M.E. and is very sympathetic. He gave Unrest a good review. He has more than 500k followers including many other celebrities so he might be a good choice to ask to advertise the study if that route was taken.