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