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

You don't get a signal linked to being English if you control within an English population. Anything linked to being English cancels out. The study only looks at differences. You might only discover the cause of ME/CFS in England but nobody is going to complain if something is actually found - it would almost certainly point the way to finding the cause in other countries, if, say, a different microbe or eating habit was more important there.

 

Not sure what study you're referring to here.

 

As I understand it, we won't be looking to recruit controls, as we plan to use the genetic data on 500k people that the UK Biobank (not to be confused with the UK ME/CFS Biobank) holds.

 

Yes, the controls are already fixed and that is why it is so crucial to recruit from a matched population.

 

I forget but I think Lenny Jason was involved. There was a US study that showed that something like 80% of people who had been diagnosed with ME or CFS by a doctor did not fit criteria. I suspect that in the UK ME Biobank study the discrepancy was rathe less.

 

That would surprise me, to be honest.

Anyone else knows which study this could have been?

 

It slightly surprised me at the time but I have a pretty clear recollection of it. Somebody will remember. I think it was the prevalence study done by questionnaire that Jason did a good while ago.

 

I'm not familiar with it, but there's a list of his studies here in case anyone recognises the title:

https://me-pedia.org/wiki/Research_studies_of_Leonard_Jason

 

@Chris PontingThis may be of some interest:

Yes. How about solving the problem of "medically unexplained symptoms" or ME/CFS and similar conditions in a serious way? We patients want our old productive lives back. We need good treatments for that and to get them we need to understand the underlying biology.

https://www.newscientist.com/articl...nic-cummings-plan-for-new-uk-research-agency/

 

yes except in the same article - the ARPA which it would be modelled on seems to have morphed into defence research. That’s not helpful for ME research.

“ARPA was founded in 1958 and helped create ARPANET, an early version of the internet. It was later renamed the Defense Advanced Research Projects Agency (DARPA) and now focuses on developing new technology for the US military.“

And

“However, researchers questioned the need for a new research agency and said its goals could be achieved through existing institutions, with more money.

“The ambitions are all sensible and laudable,” says James Wilsdon at the University of Sheffield. “The thing I find bizarre is the focus on creating a new institution. There is nothing in there [on the UK ARPA proposals] that cannot be achieved in the existing situation with UKRI.”

 

Molecular biology is specifically mentioned as possible area of research.

 

So the best-possible second cohort would be from a country that also has a large general (not disease-specific) biobank to source controls from?

To be clear, I agree that the preferred options by far would be having a tight English or UK cohort. I'm just trying to get my head around the best possible alternatives should international recruitment become necessary.

That was what I meant with "signal linked to being English". But also this: given that it's likely there are different triggers that all lead to ME, is it conceivable that there could also be more than one genetic ME predisposition? Which could be more or less common in different populations? And/or interact with an environmental factor more or less common in different locations to kick off ME?
Better stop here, I've thoroughly confused myself

 

I think it would be pretty unlikely. If a signal came up in one population another population with a Biobank would certainly be a good place to get confirmation.

 

0.2% of 60million makes 120,000 to me. That is based on diagnosed cases. No doubt there will be more undiagnosed cases but goodness knows how many.

 

Website update.

No major content changes but lots of editing has happened following feedback from the community. Feel free to continue leaving feedback here or PM me.

https://mebiomed.org.uk/

 

I may be wrong, but I don't think that method would be possible due to GDPR rules. Patients have to give permission for their medical records to be shared with researchers, unless it's anonymised data.

As far as I understand, medical records contain codes information which can easily be anonymised and is used e.g. to inform healthcare policy, free-text notes which I think would require the patient's permission to share because they are more detailed, and scanned/attached documents, which may or may not be suitable for text-searching software.

I think the only way to legally use text analysis would be if the patient was first identified and gave permission to share their record. I don't think this method could legally be used to identify potential participants, especially undiagnosed participants.

I suspect that the only legal way under GDPR would be to ask GPs and other NHS services to recommend the study to their diagnosed patients, and to ask them to put up posters etc.

I am not even sure it is legal any more for GP surgeries to contact patients by letter or phone to invite them to participate in research, unless the patient has ticked a box when registering with the surgery to say they are happy to be contacted about research.

I suspect that if the patient hasn't ticked such a box, the only legal way would be for healthcare professionals to mention the study when they see patients in person, and to have posters up around their clinics, and to put adverts for the study in their websites.

Somebody please correct me if I am wrong, but my understanding is that patient contact information and medical records can only be used for research purposes of the patient has given prior consent (including consent to be contacted about research studies they might qualify for), unless it's just the anonymised codes data being used for e.g. NHS service evaluation, strategy, and epidemiological surveillance.

Again, correct me if I am wrong!