https://www.ed.ac.uk/inflammation-research/postgraduate-training/phd-programme/research-projects The M.E. project is one of several advertised on this page. Mentions the GWAS study....
I'm surprised the GWAS is mentioned given it is not funded yet. I wonder if the project is contingent on ME-biomed being funded. Possibly not.
I really like the aims of this study. It should really help undo some of the damage done by the "fatigue and nothing else" dogma of the last few decades. Painting a full portrait of the impacts of the disease, and the harmful impacts of current paradigm, is a daunting but necessary task. We are so ready to be active participants working with enabling professionals, rather than being fought at every step and maligned by institutions. The tipping point will be once stock photos accompanying news stories abandon the yawning professional at desk. Now that will be the day.
It looks like the project is proposed as one of a pool of potential PhD projects. Students apply to the programme and once accepted, who will do which project will be finalised. Perhaps by then they will have heard back about the GWAS funding, and if they don't get the funding, a different project will be put into the PhD project pool instead? I am speculating though - of course Chris Ponting is better placed to answer this!
Yep this is what I thought. Also the project seems to have a very broad scope, almost verging on the social sciences.
For ME/CFS that might not be such a bad thing. Particularly given this statement in the description: That one little sentence actually says a great deal about how things are slowly changing for us. Incredibly heartening. @Andy.
It's part of a PhD programme which has a big patient and public engagement component. I think the idea of the programme is that the PhD students will get training and experience in both 'hard science' and the 'engagement and impact' side of science, which is increasingly emphasised by funding bodies, university ranking systems, promotion systems etc. E.g. sound to me like they are trying to train scientists with the skills necessary for surviving in the contemporary landscape of science and academia. I think the way they have incorporated this into the proposed ME project is pretty cool. They could have done it in a much less meaningful way, but I think the focus on the impact on different stakeholders/affected groups and changing attitudes as science advances is a really meaningful way to frame it.
Yes, this is true. I am hoping (not expecting!) that the GWAS is funded and that a funded PhD student picks the study. If the GWAS is not funded and a funded PhD student picks the study then - not optimal - we will carry on anyway using available UK Biobank data (on CFS not ME). If the GWAS is funded and no funded PhD student picks the study then: I will wait until the next PhD intake and try again to persuade someone to pick the student project. If neither happens (no GWAS study, no student is interested) - I don't know: I will need to consider what to do next.
I imagine that to enlightened researchers this sort of ME/CFS research has the potential to be immensely rewarding intellectually and professionally, albeit prospective PhDs might have qualms about what sort of career path it would place them on, given how pioneering it is in the ME/CFS field. I would be interested to know what you feel are the key motivators for PhD students to choose this particular research area, and how you can transmit that to potential students.
@Chris Ponting Q1: Am I correct in assuming the above quote relates to the general “UK Biobank”, rather than the “Cure ME: UK ME/CFS Biobank”? Sorry to ask what is, probably, very obvious! Brainfog Q2: (May as well be doubly dim today) My sister wants to take a DNA test (23 and me type of thing) for ancestry interests. Would her results be any use whatsoever to use as a comparison to mine, when I do my ‘spit in a pot’ for you? Apologies for using your time, Science was never my area of expertise! Thank you.
Thank you very much for clarifying, and glad to hear that there are several options. I would personally love to do this study, but I haven't finished my BSc yet and unfortunately do not live in Scotland - otherwise I would have applied! I am guessing an application from somebody with a PhD in social science and one-third of a Bioscience BSc, to do the project part-time working remotely, would be a bit of a long shot It sounds (to my biased ears) like it would be an extremely interesting and rewarding PhD project, so I really hope there are applicants interested in it.
To answer in brief for Chris, as he might not be back for a while. Simply, yes. He's referring to the genetic data stored by the UK Biobank, which holds data on 500k participants, a certain number of which self report a CFS diagnosis. My understanding is that we won't be able to use results from commercial DNA testing, although I don't recall the reasons why.
Which is definitely a plus. Science without morality and humanity is what gave us the BPS model. Medical science would definitely benefit from a more humane approach that rewards soft skills that are so lacking in medicine they are given the special monicker of "bedsides manners".
They are partial genome decoding, focused only on reading genes that are known to play a role in disease. Last I heard is something to the order of 1/5,000 genes are read. That's why they're cheaper, about $100 vs. $1K for a full genome decoding (though that last one is dropping and dropping and should pretty soon be comparable).