Closed UK: DecodeME updates, was recruitment thread.

You don't think having the cooperation of the NHS would have increased turnout? They help recruit all BPS stuff, heavily in fact. In fact it's exceptionally rare to have an initiative funded at this size with basically zero support from the healthcare system. Especially with Long Covid, I think that reaching the target would have been easy if there had been interest and support.

 

Sure, you know better than me what level of cooperation, interest and support DecodeME has had from the NHS. You do you, I don't have the energy to waste and need to eat.

 

Following Jonathan's drafting - her indoors - has suggested getting the study motioned in health journals [Jonathan motioned journalists], programs on health ---
Inside Health on BBC Radio 4?

 

Even if nobody else joins, I'd expect a GWAS of 9k people to still find something. In my non-scientist opinion.

 

ETA. This was supposed to be in reply to @Trish don't think my phone is playing well with the forum software.

I contacted "my" one, North Bristol, and they already had a link on their webpage. But I think I convinced them to mention it as part of their Foundation course.
When I did mine they were pushing an MRI study so they're interested in research. No idea what their "footfall" is though or what percentage might turn into participants in a study.

I'd say go for it, get in touch with them. It can't do any harm.

 

Do you have any thoughts about who should approach these people/bodies, and how?

Why would Versus Arthritis tell their members about this when their focus is arthritis? I think I must be missing something, but if non-ME medical charities would promote this then there are some massive ones.

 

What level of cooperation has there been? The question was asked a while ago and there was none, unless that changed. None that is visible, for sure. The hostility is weird, frankly.

 

I think the ME/CFS population is heterogeneous and other GWAS studies, of conditions like high blood pressure i.e. with a clear/er diagnosis, have required 50K people, but then I have very limited knowledge too!

I was talking earlier to someone and motioned my disappointment, re the fact that Sajid Javid was leaving parliament, --- e.g. opportunity to get £5 million to do 5000 ish whole genome sequences - to look for rare variants - another potential route into understanding ME/CFS.

Keep in mind that DecodeME are working with a data analysis group - aim is to look for clusters/sub-groups - so that might help re heterogeneity.

 

I wonder, though, if decisions on requiring those numbers might partly be influenced by the fact that you can get them because the conditions are so common? And that they put at risk the lives and wellbeing of such large swathes of the population that it's easier to prioritise big funding pots for research? Conditions like ME aren't nearly as common, so it's not practical to design study outcomes relying on the recruitment of such vast numbers—but it doesn't necessarily mean a study is less likely to pinpoint something concrete.

 

Versus Arthritis are interested in a wide range of things. They certainly fund widespread pain studies, muscle disease and so on. It may be that their remit is more or less that of rheumatology, which has quite wide borders. The MRC obviously has a very wide remit but in terms of charities I am not sure I can think of any as big as Versus Arthritis that might cover ME. On the other hand since this is not a matter of asking for funding but simply making people aware of a project there might be scope for getting a message out.

 

Thanks, Jo. Do you think that this is something that DecodeME could approach them with directly? Or something that should come from one of our own charities?

 

People from out of country would be more than happy to submit to questionnaires and provide samples.

 

They can't do that because their control group is UK residents. If they accept samples internationally, the control group's no longer a match.

 

Patient population size is important - Blood Pressure UK puts Hypertension prevalence in England at 31% of men and 26% of women - conservatively we could say that UK prevalence is 25% of a population of 67 million i.e 16.75 million, so a sample of 50,000 would be 1:335

With (IIRC) 9,000 spit tests alone already collected and a top end UK ME/CFS population of 250,000 that's a sample of 1:27.8

 

Yes, that is our hope as well. As I understand it, based on previous findings from other GWAS into other conditions, if there is something to be found then 9k gives us a reasonable chance to detect it. However we have aimed for 20k as, based on previous studies, this would give us the best chance, relative to numbers recruited.

Thank you so much for contacting them. Given, contrary to perhaps what some people might think, that there is no NHS-wide system of contacting all patients with a diagnosis of ME, so we are doing our best to find various ways to reach as many patients as possible. We have not encountered anybody within the NHS being obstructive to these efforts, and most are more than keen to pass details on to patients. However we only have a small team who have many things to do, so every time that members of the community, such as ringding, make enquiries with their local clinic (for example) just increases our reach. Even if you find that we have spoken to the same people, reminding very busy people of the study can help as well.

As RedFox notes, our control group is from UK residents. As things stand now, I think it is unlikely that we will ever be looking for samples from people overseas. The situation might be different if we were to receive a substantial amount of additional funding; to be honest the better solution would likely be that a parallel project (or projects) be launched elsewhere.

 

Note it says:

Not everyone will have returned their sample and as I understand it, not all submitted samples can be used.

 

I'm imagining the same thing. If Decode recruits enough people to find something but falls short of its goal, there'd be a strong argument in favor of a GWAS drawing from a larger pool (perhaps USA or international).

 

I don't know the rules about this but am tempted to assume there are none and that the DecodeME team could contact directly, indirectly or however anyone can think of. I don't really see any conflict of interest in just asking organisations with communication systems to help spread the word about an established MRC funded project that is in everyone's interest to run well. But the DecodeME team may well have thought through all these ideas anyway.