Our research work

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Our projects and PhDs

Our projects and PhDs

In our 2022 - 2027 strategy, Shaping our future together, we set out our ambition to increased funding for high-quality research by more researchers, leading to effective treatments for M.E. We will:

  • aim to deliver £2 million investment via our Breakthrough-ME research strategy
  • drive M.E. genetics research forward through a virtual Genetics Centre of Excellence and Genetics Research Summit with the Medical Research Council Human Genetics Unit at the University of Edinburgh.
  • ensure patient and public involvement is at the heart of driving research forward
  • address the shortage of M.E. researchers by investing in a Future Leaders programme
  • co-deliver DecodeME, the world’s largest genetic M.E. study, and seek to expand this research model to provide greater insight and research opportunities
  • work collaboratively to ensure progress in M.E. research is accelerated ensuring M.E. is included in Long Covid research.

M.E Genetics Research Summit

Following the exciting launch of DecodeME, we held our first M.E. Genetics Research Summit on September 14 2022. This is part of Breakthrough-ME, our plan to rapidly grow research and funding, alongside the MRC Human Genetics Unit at the University of Edinburgh.

The Summit bought together researchers interested in M.E., people with M.E., carers, and potential funders to drive collaboration in this field. The hope is to develop a 10-year programme of M.E./CFS genetics research.

The Summit topics included;

  • What would a 10-year programme of M.E./CFS genetics research look like?
  • How can we drive this research forward?
  • How can we forge links with researchers who are not currently active in M.E./CFS research?
  • How do we ensure patient and public involvement is at the heart of future genetics research?

The Summit was recorded and is now available to watch on our YouTube channel.

You can visit our news story that covered the M.E. Genetics Research Summit for further details and information on the topics and workshops the Summit covered.

Our research-related activity is funded by our Clare Francis Research Fund, named for our President.

You can make a donation to our research activities by:

  • visiting our Clare Francis Research Fund page on JustGiving
  • calling 0117 927 9551 and speaking to the Fundraising team
  • texting CFRF87 and your donation amount (£3, £5 or £10) to 70070 (texts to this number are free).

Our current projects

All funding applications we receive are put through a five-stage funding assessment process, overseen by our Research Panel, with input from our Scientific Advisory Panel and people with M.E. We are currently funding:

  • The first Clare Francis Research fellowship was awarded to Audrey Ryback. Audrey will be affiliated to the Genetics Centre of Excellence at the University of Edinburgh, with Professor Chris Ponting supervising the 2-year fellowship. Addressing research priorities 3 (accurate and reliable diagnostic test) and 10 (understanding the impact of ME/CFS on mitochondria) as identified by The ME/CFS Priority Setting Partnership, Audrey’s research aims to identify serum factors possibly causing changes to mitochondria in those with ME/CFS which could, in turn, be developed into a diagnostic test.
  • PhD-level research, jointly with King’s College London, funded jointly by Action for M.E. and ME Research UK looking at Retrotransposon Insertion Polymorphism, a type of genetic variation (from June 2022)
  • PhD-level research jointly with the University of Oxford, looking at the role for the microbiome and leaky gut as a symptom of M.E./CFS and other conditions associated with chronic disease (from June 2022)
  • a University of Edinburgh PhD Studentship comparing immune cells (T cells) from people with M.E. with those from controls (from June 2018)
  • a brain inflammation PhD Studentship supervised by Prof Neil Harrison, now based at Cardiff University (from June 2018).

We work in partnership with the UK ME Research Collaborative.

Our Chief Executive, Sonya Chowdhury, is Co-Investigator on the M.E./CFS Biomedical Partnership, leading DecodeME, the world's largest M.E. DNA study.

She has also been Lead for the M.E./CFS Priority Setting Partnership, which worked with the M.E. community to identify their top 10+ M.E./CFS research priorities to influence future research funding, launching its Defining future M.E./CFS research report in May 2022. We hope these will change the research landscape in the UK and beyond.

Sonya is a member of the Interdisciplinary Canadian Collaborative ME (ICanCME) Research Network.

Previously funded projects

Research we funded prior to 2016 (when we launched our five-year strategy with a focus on funding PhDs and our Clare Francis Fellowship) include: