UK plans world’s biggest biomedical ME/CFS study

Biomedical scientists from a range of disciplines met for a two-day workshop in Bristol on 13 and 14 April to discuss the ME/CFS “Grand Challenge” project, which plans to use a “big data” approach to the biochemistry of the illness and determine whether it is, as suspected, several different diseases. The study will be the biggest ME/CFS project in the world to date.
The event, held by the UK CFS/ME Research Collaborative (CMRC), included “big data” omics specialists covering genomics and epigenetics (looking at DNA), proteomics (looking at proteins) and metabolomics (looking at small molecules produced by cells, including gut bacteria). There were also experts in infection, pain, sleep and primary care.
Bristol University epidemiologist and genomics specialist George Davey Smith, who is expected to take a leading role in the group, is one of the most widely cited researchers in the world, with over 1,000 publications. His research specialities include large population studies and improving research methodology: one of his most influential papers, on detecting bias in research, has been cited nearly 16,000 times.​
Other experts at the meeting were Professors Chris Ponting, Chris Smith, Caroline Relton, Andrew Morris, David Ford, Paul Moss, Jim Horne, Maria Fitzgerald, Paul Little, Dr Rick Dunn and, from bioscience company Somalogic, Mr Tony Bartlett. Each gave a presentation on how their field could help progress research into ME/CFS.
The group, called the ME/CFS Epidemiology and Genomics Alliance (MEGA), intend to perform a genomics study of at least 10,000 adult and 2,000 child patients with ME/CFS, plus controls.
ME/CFS patient and science blogger Simon McGrath said, “We’re talking about huge cohorts and there’s nothing like this anywhere in the world. Plus a lot of new researchers are coming to play. A whole load of talent from other areas is taking a keen interest in ME/CFS for the first time, ready to apply some smart technology — widely used in other, less-neglected illnesses — to our illness.”
He added, “Finally, it looks like we will see biomedical research in the UK on a big enough scale, and with enough new technology, to make deep inroads into understanding this illness — or illnesses.”
The report on the meeting stated that the patients will be described “with more detail than has previously been collected on characteristics such as pain and sleep patterns” and that blood and urine samples will allow them to investigate, in terms of DNA, RNA and other molecules, what distinguishes individuals with ME/CFS from controls.
The study will, the report said, aim to understand “more about the causes and underlying biology” of ME/CFS and about the different types of the illness, with the potential for new diagnostic tests and treatments for each type.
The report added that the group “will actively engage with researchers worldwide to further replicate and investigate findings” and that the very large collection of samples and data would be of interest to researchers from a wide range of disciplines.
MEGA anticipates applying for funding at the end of 2016 and, if successful, beginning data and sample collection in late 2017.
Other members of the CMRC were described as “joining [the experts] at the workshop”. They were Sonya Chowdhury (Action for ME), Professor Julia Newton (Newcastle), and two proponents of the biopsychosocial model of ME/CFS, Professor Peter White (QMUL) and Dr Esther Crawley (Bristol). Dr Simon Collin (Bristol), who has co-authored a number of papers with Dr Crawley, was also present. Patients have been concerned about the inclusion in the CMRC of researchers who take a biopsychosocial approach to ME/CFS since the organisation was set up in 2013.  The extent and nature of these researchers’ involvement in the Grand Challenge is unclear.
The report of the workshop outlines a communications strategy with patients, and states: “The group discussed how engagement of people with ME/CFS and participation during development of the study will be essential. This will include establishing advisory groups, for adults as well as for children and young people with [ME/CFS]. The group also considered the importance of maintaining good two-way communication with the wider community and providing updates on the progress being made.”
Each of the workshop participants agreed to write blog posts about the potential benefits of their respective fields to ME/CFS research, to be published over the next few months.​


9 thoughts on “UK plans world’s biggest biomedical ME/CFS study”

  1. Katharine Stokes

    about time as noone get itxx i knew i was ill 4 years back took 3 half years for docs to say ok you ill got something called cfs/me.. but just left me to go that was it.. it ruined my life. im a guadian of a 11 year old he is now.. granson with mental problems.. it been so hard.. and i cant get NO sickness . benifits as i have been his carer.. but have had to contact socail services has the docters and every speacalist left me like this..i need mobility.. but cant pass pip as im a carer.. i need to go out more to get my boy apointmants.. i stuck.. as i classed as nothing

  2. I hope the “patients with ME/CFS” who will be in this study truly have ME/CFS, i.e., NOT using the Oxford or Fukuda Criteria.

  3. I have suffered from ME/CFS for twenty years and in may respects nothing appears to have progressed beyond being given CBT.

  4. Is there any way to sign up to say we want to take part in this? I’d love to be part of this.

  5. Lots of questions- will the ICC or CCC plus post exertional exacerbation of symptoms be used for patient selection?
    Will the raw data be shared?
    Will patients have direct input?
    Will patient Input be filtered by AfME, which has direct links to some of the controversial biopyschosocial researchers?
    Will the input of young people be filtered by Action for young people with ME?
    Why are biopyschosocial “reserschers” on CF included in a study on ME//CFS?
    What is the role of the biopyschosocial “researchers”.
    The flaws in the PACE study have not been addressed to date. Are any of the PACE authors involved in the study design/research?
    Is this exclusivity a biomedical research project?
    Is this study supported by Invest in ME?
    Is this study consistent and workin wiht the UK and Australian, biomedical researchers?
    Will patients selected, be required to do, a 2 day CPET test, in order to establish the presence of post exertional exacerbation of symptoms?
    There are a lot of “new names” which is reassuring.
    Will this study be funded by or contain researchers with links to insurance companies, the department of work and pensions?
    Will the profoundly ill be looked at- if so what % of patients will be profoundly ill- bedridden?

    1. Robin
      These are all questions that need answering. Hopefully Invest in ME make their opinions known. One wonders how George Smith would view the PACE trial. I might be mistaken but wasn’t White one of the contributing researchers? So why is he in this? Probably to blurr the definitions as Wessely managed to do so effectively.

  6. Personally I cannot support a study that includes Peter White and Esther Crawley. They have no place on a biomedical research project.

  7. I just read the name “Peter White” who will be involved in this study. This gives me a awkward feeling…

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