Researchers and patients are about to submit an application to the UK’s two big medical research funders for a 20,000-patient genetic study. The team want people with ME to sign up to show funders that the community backs the study and that large numbers of people are ready to join it.

Your action today could help the world’s largest ME/CFS genetics study win funding – and could make a huge difference for patients, helping to identify biological causes of the illness and unlocking far more UK funding for biomedical research.

On 23rd January, the ME/CFS Biomedical Partnership made up of researchers, people with ME/CFS and carers, will make a grant application to the Medical Research Council and the National Institute for Health Research. The Partnership needs £3.5 million for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS).

The project will be led by Professor Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

A GWAS aims to uncover some of the biological roots of disease. By scanning the whole of human biology and probing small DNA differences among people, a GWAS can help to pinpoint the genetic causes of disease and then can help to guide drug development. This method has helped to identify genes – and the molecular and cellular pathways associated with them – that play a role in diseases such as rheumatoid arthritis and Type II diabetes. (See my blog about the science of GWAS).

Drug development is now under way in numerous diseases because of GWAS. This, and the identification of biomarkers, could happen for ME/CFS too.

Because researchers are looking at small differences, they need to look at DNA data from a lot of people. The ME/CFS study will recruit around 20,000 patients whose DNA will be compared with that of similar numbers of people who do not have the disease. The DNA will be extracted from saliva samples, and the study uses a “spit and post” design, so even people who are bedbound or housebound can take part.

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3 more reasons to back the project

1. Another big reason to support the study is that it includes creating a research cohort of 20,000 people – each clinically diagnosed with ME/CFS and who meet either the Canadian Consensus or Institute of Medicine (now called the National Academy of Medicine) criteria, both of which are widely used in biomedical research. The Partnership will set up a system to give other researchers easy access to DNA data, questionnaire answers and other information on this large number of people. This huge resource will help other researchers create robust studies more easily. The data will be made anonymous and held safely and securely.

2. All participants will be asked if they would be willing to be contacted in future about taking part in further studies. The hope is that the overwhelming majority of patients will say yes. Being able to easily recruit many patients will help researchers and should lead to better and faster research – and so more progress.

3. Patients are at the heart of this study. There is a Public Patient Involvement steering group with representation from patients and all the main charities. Two representatives, Sonya Chowdhury, CEO of Action for ME and a carer for someone with ME/CFS, and Andy Devereux-Cooke, a patient, are co-investigators on the study and sit on the management committee alongside two researchers.

Patients and charities have already started reaching out to other patients to sign up for the study, because the higher the number of sign-ups, the more the funding bodies will understand the need for the study and be reassured that patients will support it. Over 4,000 patients have already signed up in just two weeks over the holiday season. And we need more – could we make 10,000?

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Speed is, of course, of the essence for patients. We’ve waited so long for good biomedical research, and for treatment. And the more patients who’ve said that they want to take part and want to be contacted if the work is funded, the faster the work can go. Signing up now should speed up the work later.

As Professor Chris Ponting says, “Patients with ME/CFS deserve the best that biomedical science has to offer, and it’s long overdue. But to get enough patients, fast enough, we’ll need a community-wide effort. Signing up early, and in large numbers, is the best way for patients to help us help them right now.”

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20,000 people with #ME needed for genetic study if we get funding #hope Application submission due 23 Jan. Help demonstrate to funders we can achieve our ambitious recruitment targets https://t.co/1g9KeSiS2a and make #NewYear a year of change for people with #ME #MECFS — Sonya Chowdhury (@SonyaChowdhury) December 31, 2019

Image credits: Main DNA picture, © Can Stock Photo / Svisio