Edinburgh Chris Ponting GWAS PhD project advert

Project summary
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long-term, fluctuating, multi-system condition that affects all age groups and all ethnic and socioeconomic strata. People with ME/CFS experience severe, persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms. An estimated 250,000 people are affected by ME/CFS in the UK and it is the greatest cause of school absenteeism. As recognized by the NICE guidance, there is no test to diagnose ME/CFS and no known cure. The ME/CFS community is underserved, neglected and woefully misunderstood by society.

This project will contribute population genetics analysis to a UK genome-wide association study (GWAS) of 20,000 people with ME/CFS that seeks to reveal the genetic predisposition of this devastating disease. Simultaneously, the PhD student will chronicle the challenges and successes in how patients, carers, public and scientists join together to achieve a common aim. The influence of genetic findings on patients and the public, and the influence of people with lived experience of ME/CFS on scientists, will be captured as they occur in real time. It is expected that perspectives of clinicians, GPs and the general public will be irrevocably transformed by this study and by ME/CFS genetic findings.
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We're famous folks! ;)
Engagement development
We define patient-public involvement (PPI) in this research as being carried out with or by members of the public rather than to, about or for them. Partners of this UK genetics project include Forward ME charities and a cofounder of the Science for ME website. Recruitment of 20,000 people for the genetics study requires an exceptionally high level of engagement of a marginalised community. Two PPI members are co-investigators on the NIHR-MRC funding proposal. There is no aspect to this project that does not require Involvement which calls for high levels of effective dialogue among patients, public and scientists.

The successful PhD applicant would work alongside human geneticists, people with ME/CFS, carers, public relations or marketing experts, charity sector workers, politicians and communications experts to capture the successes and difficulties in addressing questions such as: (i) what are the different perspectives on the causes of ME/CFS, (ii) why is there no diagnostic test or cure and what does this mean for the lived experience and treatment of the disease, (iii) why are ME/CFS symptoms commonly disbelieved, and how does this impact on both patients and health care professionals, and (iv) what expectations do the range of stakeholders have of collaboration and partnership and how do these influence involvement and engagement?
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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.
 
InitialConditions said:
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.
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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!
 
MerryB said:
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!
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Yep this is what I thought. Also the project seems to have a very broad scope, almost verging on the social sciences.
 
InitialConditions said:
Also the project seems to have a very broad scope, almost verging on the social sciences.
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For ME/CFS that might not be such a bad thing. Particularly given this statement in the description:
It is expected that perspectives of clinicians, GPs and the general public will be irrevocably transformed by this study and by ME/CFS genetic findings.
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That one little sentence actually says a great deal about how things are slowly changing for us. Incredibly heartening.
Partners of this UK genetics project include Forward ME charities and a cofounder of the Science for ME website.
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:thumbup: @Andy.
 
InitialConditions said:
Also the project seems to have a very broad scope, almost verging on the social sciences.
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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.
 
MerryB said:
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!
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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.
 
Chris Ponting said:
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.
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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 said:
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).
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@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 :confused:

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.
 
Chris Ponting said:
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.
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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.
It's M.E. Linda said:
Q1: Am I correct in assuming the above quote relates to the general “UK Biobank”, rather than the “Cure ME: UK ME/CFS Biobank”?
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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.

It's M.E. Linda said:
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?
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My understanding is that we won't be able to use results from commercial DNA testing, although I don't recall the reasons why.
 
MerryB said:
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.
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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".
 
Andy said:
My understanding is that we won't be able to use results from commercial DNA testing, although I don't recall the reasons why.
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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).
 
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