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

For those people having trouble finding, or filling in, the survey, you should be able to see it here, https://mebiomed.org.uk/get-involved/, the page should look like this

with the survey in a separate box on the page under the block of text that starts "Would you be willing to potentially take part...".

If you don't see it the first time, please close the page/tab and try again. If you still don't see it unfortunately, at the moment, I have no solution that I can advise. However, this is not the one and only chance to express your interest/join our mailing list, should we secure funding then we will have an improved system in place.

 

I think I can speak for us all & say Happy Christmas & New Year to you too @Chris Ponting

thanks for all your hard work on this

 

The problem is, @Andy, as you can see above, that it is not clear that you have to scroll down to find the boxes to tick. There is just a question and 'exit'. Savvy people may see the scroll bar on the right but I certainly didn't. On your picture above the bottom line of text is slightly obscured which would probably give a clue, but on my screen there was space below the bottom line giving no clue that there might be more hiding.

 

Happy Christmas and thanks to @Chris Ponting,@Andy, Sonya Chowdhury and all members of the Public Patient Involvement Group who have been putting in epic amounts of work to try to make this project happen.

Above all, thanks to all the above for engaging with the patient community in a real and meaningful way.

 

As one of the world's leading geneticists, why is Ron Davis not advocating for this kind of study?
I would be interested to hear his views on this particular proposal.

 

Yes, I agree. May be a bit too clunky for some ill people to manage.

 

Obviously it doesn't work quite as well as we would like but I'd like to stress that this is an interim measure until, hopefully, we receive funding and put in place a better sign-up function. We will do what we can to improve it but we may be limited in scope in what we can change for now.

 

Can instructions be added to the site in the meantime?

 

Thinking a bit more about the celebrities. If we can get one onside, I wonder if they can communicate how unique and desperately needed this project is, and convince them to use their celebrity network to spread the word, just as we intend to via our own social networks.

We have some people in our community who have some connections, including broadcasters - I'm thinking about @Gary Burgess and John Darvall, and other people can probably think of more.

We can probably defer listing these celebrity contacts until later but if the project gets funding, we could put our heads together to come up with a list.

 

Probably unreasonable to expect this before the New Year.

 

Gary is currently undergoing chemotherapy; probably not a good time to 'bother' him.

 

Some comparisons with the GLAD study, which I think illustrate why reaching the target will be so hard, at least recruiting in the UK:

Key numbers

1 in 3 people have ever had anxiety or depression, so the GLAD study needs to recruit less than 1% of its target audience. In marketing terms, this is very doable (I used to work in non-profit marketing, including for Oxfam). Especially as such a common illness will more readily media attention.

By contrast, around 1 in 250 people have ME/CFS, so our study probably needs to recruit at least 30% of i ts target audience (if recruitment is restricted to the UK, which makes things easier and more affordable). This is an enormous challenge, and it appears that no other study has attempted to do this using online recruitment.

More details in the quote box below.

On the other hand, there are no good treatments fpr ME/CFS, very little is known about what causes the illness and there is a fired-up patient community that will hopefully be ready to spread the word. Whether or not this it is enough to get us over the line it remains to be seen.

Added: that said, the GLAD campaign was backed by all the main mental health charities (bigger than ME charities) and they got quite a lot of celebrity backing as well (which again is easier to get for a study about a common condition).

Also, @Jonathan Edwards' idea of setting out to recruit every patient in the UK would help make this a big story in itself.

 

Victoria Derbyshire has always been very good to us.

EDIT: And that other guy on the radio, can't remember his name.

 

If you mean that man (again) on the wireless I think he died in 1949.

 

oh no I'm so sorry to hear that!

If you ever pick this up @Gary Burgess I hope it all goes well & you make a full recovery.

 

My estimate of the size of the UK patient community - feedback appreciated

The UK online patient community, loosely defined, might be 35,000 people, with perhaps another 5000 beyond that who can be reached through ME/CFS groups and charity member mailings. So 40,000 people with ME in total. (I actually feel this might be on the optimistic side).

This is just under 20% of the estimated 215,000 total patient community (0.4% of 55 million UK adults). If we assume nine in 10 of these (36,000 people) have a diagnosis and so are suitable for the GWAS, that's about a quarter of the estimated 140,000 people with a diagnosis of ME/CFS.

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35,000 people in UK online community: rationale

I have assumed that the vast majority of people in the online community will, at some time, have liked the Facebook pages of either the ME Association or Action for ME. Each of these has around 20,000 likes.

I have been told that almost all the likes for the ME Association are (unsurprisingly) from the UK, and I will assume it is the same for AfME. I gather there is a heavy overlap in the postal membership of the two charities (long ago I heard it was over half)

If we assume that there is a 50% overlap in Likes between the two, that gives a total of 30,000 people who have liked at least one page.

Set against this, some likes will come from carers and supporters who do not have ME/CFS themselves. On the other hand, not all members of the community will like you the charity. So I am going to soon that the total UK online patient community is a bit over 30,000, say 35,000 people. (I think it's also fair to assume that almost all of these people have a diagnosis, given that they bothered to take part in the community.)

Bear in mind that liked a Facebook page at some point in the last five years is a fairly weak definition of someone being a community member.

Thoughts?

 

If the UK patient community is 40,000 people, what does that mean for recruitment to the GWAS?

In marketing terms, including non-profit marketing, getting 50% of any audience to do anything is a very tall order.

Assume we can persuade 14,000 people with ME (40% of the UK patient community with a diagnosis) to register. Then assume that 45% of them completed the questionnaire, passed the online screen and returned a saliva sample (better than comparable studies), that would generate 6500 participants.

Which is pretty good, though is 13,500 short of the 20,000-participants target. PR and online advertising will help. However, getting patients within the community to reach out will be very important too.

As @Jonathan Edwards says, getting PwME to recruit others with this illness can be a powerful recruitment method (though I feel his estimates are quite optimistic), and also helps to generate an unbiased sample.

As well as reaching out to personal contacts, there's probably a lot of scope to promote the study in our own communities. This includes letters to newspapers and using other local media, as well as local Facebook groups.

Comments? No rush, I might not be back for a bit.

 

That is an interesting way of trying to gauge the minimum number of people who are aware of online material on ME. I say minimum in that if someone has liked a site they must exist, even if maybe some likes are from friends and relations.

The interesting question raised for me by this is the extent of the 'silent majority' who do not like Facebook sites, or don't do likes, and why they are silent.

I think there are some simple reasons. I have never entered a Facebook site because I do not belong to Facebook on principle. I think there may be quite a lot of people, in particular over 60, who never look at Facebook sties for all sorts of reasons even if they use the internet on a daily basis.

And then there is what one might perhaps call the people with 'closet ME'. That term may be a bit too strong but I have reason to think from what people say on the forums and from social contacts that quite a lot of people with ME prefer to keep the fact to themselves and maybe not even admit to themselves that they have an illness seen largely as defined and 'owned' by clinical psychology.

I can easily imagine people with ME logging on to AfME or MEA sites and not clicking like simply because it represents a commitment to the idea of being 'someone with ME' or 'someone with CFS' when there is an alternative to look on from outside and not commit. And having had an official diagnosis does not necessarily alter that.

The next question is whether or not such people would commit to sending in a DNA sample.

It may not hit the right note but I wonder whether there is something to be said for putting out a call for everyone in the UK with ME to volunteer for the proposed GWAS project not just out of goodwill and desire to help science (and of course patients) but as a statement of solidarity: in the recognition that PWME are real and matter - that there should come a time when PWME should not need to think maybe they should keep quiet about it. After all if 25,000 people send in samples they must be real.

And of course this is going to be a situation where nothing succeeds more than success. The more that press releases can be put out saying that 10,000 volunteers have signed up in the first week the more likely that will encourage others to join in.

And the more the project is oversubscribed the more applicants for further grants will be able to say there are 50,000 people out there wanting us to do this research.