DecodeME - UK ME/CFS DNA study underway

Good point, but would have expected it to be om their website as that is updated more often

 

This is also discussed on this thread;

https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-30#post-269795

And I have just posted the last two paragraphs of this article on the thread, which was post #591

 

Absolutely delighted by this good news. A big, warm thanks to everyone involved!

A question: recruited participants will (normally) all be from the UK, but the NHS apparently do little testing before establishing a diagnosis of ME/CFS. A non-negligible amount of patients who have not been able to receive further medical testing -- and thus may have a condition other than ME -- will possibly apply to the study. Is that a problem for the GWAS?

The subject must have been brought up with the MRC and the NIHR during the application process. The CureME algorithm should be reliable, so even if there will inevitably be missed alternative diagnoses I think they will be few and won't skew the results of the GWAS. But given that the NIH have rejected many applicants to their intramural study (and participants after round 1) after extensive medical history review & testing, which sometimes led to finding rare conditions, it seems to be a question worth asking.

EDIT: just noting that if genetic testing reveals a (rare or not) genetic condition in a participant and that it turns out to be the cause of their ME symptoms, their results can be separated from those of other participants.

 

Great I’m not an expert in hypothesis testing/statistics, but this means it has sufficient statistical power?

Two more things:

- Analyzing subsets would be interesting! For example, if a genetic predisposition to ME is identified in participants without an Ehlers-Danlos syndrome (EDS), it would be helpful to know if participants with EDS also have it. Otherwise, it may mean ME with and without EDS do not have the same biological root.

- If the GWAS successfully identifies a genetic predisposition to ME, then that is a pathway to prevention... Future generations could be told whether they are at a higher risk of developing ME and, subsequently, could be incited to minimize their exposure to pathogens & other ME triggers. That alone would be a significant step forward, we cannot afford to let one more generation to suffer from ME.

 

I don't have time to read all 13 pages, but given that the research is genetics-based, would it also be useful to have samples from "healthy" family members for comparison?

 

It would also be good to have samples from those lucky few who have recovered

 

ETA: Fix quoting issues.

 

NIHR launch announcement, https://www.nihr.ac.uk/news/largest-genetic-study-into-myalgic-encephalomyelitis-is-launched/25098

 

The protocol may well the best choice but I don't actually understand this statement:

Those who pass the Canadian Consensus or Institute of Medicine criteria can participate. Following these criteria to the letter (as we will do) unfortunately means that those who are fully recovered will not be able to participate. This is an unfortunate but inevitable consequence of the need for us to fully comply with these criteria.

It does not answer the question of why there is a 'need' to fully comply with criteria applied non-retrospectively. Science does not have 'needs' like that in general. You choose criteria that best help you ask a question. You have reasons. There may be a good reason for choosing to fully comply but so far we have not been told what it is!! Personally I think that if recruitment did fall short on currently applied criteria it would be more powerful to recruit UK subjects with a past history than to go toothed populations.

 

The reason may be that most patients were not given the diagnosis based on CCC and IOM critera but on Fukuda or NICE. Therefore you would have to do a retrospective diagnosis with the CCC and IOM which has the usual problems with recall.

Edit: and I suspect a lot of doctors don't follow diagnostic criteria strictly but go with their own judgment. Patients may not know what criteria their doc followed.

Although that isn't a good reason to exclude patients that have some doctor's notes somewhere that says they met CCC or IOM criteria at some point.

 

That is a bit of a scary thought but general practitioners do not know the difference between criteria, or the nuances, and most of them would not know what post exertional malaise means. And in Canada, most physicians do not even know the Canadian Consensus Criteria. Most patients have had to educate their physicians, and that is a horrifying thought for all the physicians out there.

Medical education for ME is still inexistent in med schools. There is a lot of work to be done.

Edit to add: most patients would be able to tell which case definition they meet and do not meet.

 

I'll leave that to the researchers to answer that one.

 

I don't think *any* patients in the UK will have been diagnosed by the CCC or IOM criteria. I think the NHS only uses the NICE criteria. I'm assuming that for DecodeME, you have to have had a diagnosis and then that we'll have to fill in some sort of CCC/IOM checklist to see if we're eligible for the study.

 

Personally, I wasn't diagnosed using any criteria in 1999. I'd been ill since 1976, and a major relapse was the reason for signing up with a GP in a city I'd moved to a few years previously.

The GP did his best to exclude every alternative diagnosis he could think of. When after several months he still hadn't been able to find anything abnormal, he told me that his instinct from the outset had been that it was ME.

I do meet both the IOM and CCC criteria, though (the only core ME symptom I've never had is 'headaches of a new type/severity'). I suspect quite a number of people who've been ill for years will not have been diagnosed against any criteria in use now, and will have to assess themselves. It's not necessarily any less accurate than a GP doing it, as long as reasonable efforts have been made to rule out other conditions.

 

I’ve registered, do you get a confirmation email? Just wondering.

 

Don't seem to. I think they missed a bit of a trick here, because it is the expected norm these days, out of politeness if nothing else, to send a confirmatory email when someone registers or signs up for something. A slight omission in public relations I think. But I also appreciate this is likely a learning experience on their side, but would be good to correct in due course. The registration process needs to come across as highly professional, because indirectly people calibrate their thoughts of the whole operation on details such as this.

 

Yes, someone was asking on fb whether they’ve sent out confirmation emails. I replied saying I haven’t and others I know don’t seem to have got one either. But then someone replied underneath saying I had a confirmation email asking me to spread the word. So now I’m really confused.

It may be a good idea to send confirmation emails to everyone who has already registered now, even if it was from a few days ago.