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ME/CFS Genetics, Truth and Reconciliation

This project is no longer listed on FindAPhD.com and may not be available.

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  • Full or part time
    Prof C Ponting
    Dr S Cunningham-burley
  • Application Deadline
    No more applications being accepted
  • Competition Funded PhD Project (Students Worldwide)
    Competition Funded PhD Project (Students Worldwide)

Project Description

The newly established four-year Medical Sciences & Translational Research PhD with integrated studies in Engagement for Impact Programme will combine medical science and translational research projects with integrated and credited teaching in science communication, public engagement, patient involvement, data design and informatics, via established MSc courses and/or new Engagement for Impact courses. Our vision is to teach a generation of researchers equipped to address and solve real-world problems through excellent science and who have the engagement and impact skills we believe will give them an edge in their future careers.
https://www.ed.ac.uk/inflammation-research/postgraduate-training/phd-programme

This potential PhD project, selectable by successful applicants to this Programme, is supervised by Prof Chris P Ponting (https://www.ed.ac.uk/mrc-human-genetics-unit/research/ponting-group) at the MRC Human Genetics Unit, IGMM, with co-supervisor Prof Sarah Cunningham-Burley.

Project Summary:
ME/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.

References:
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Redefining an illness. https://www.nap.edu/read/19012/chapter/1

Engagement for Impact:
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?

Funding Notes

This is one of the potential projects in the University of Edinburgh College of Medicine and Veterinary Medicine’s new 4 year Medical Sciences & Translational Research PhD with integrated studies in Engagement for Impact Programme. Successful applicants will select their preferred PhD projects from the available options in discussion with proposed supervisors. Three studentships are available in the programme, providing full tuition fees (EU/UK rate only), stipend of at least £15,000 per year, £450 annual travel and conference allowance, dedicated engagement support grant of £1,500, and £5,000 annually towards research consumable costs.
Apply before 26th January 2020 at https://www.ed.ac.uk/inflammation-research/postgraduate-training/phd-programme




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