Professor Stephen Holgate has said that the researchers developing the “Grand Challenge” research project on the biological mechanisms of ME/CFS are “the best in the UK — the very best — and it’s what we call a ‘dream team’.”
Professor Holgate was speaking at the livestreamed annual general meeting of the UK CFS/ME Research Collaborative (CMRC) on 27 April. He said that the Collaborative had attracted new researchers to the field and to the Grand Challenge, whose expertise ranged from arthritis, to information technology, to molecular genetics.
He explained that the research team would submit a grant towards the end of the year for the collection of blood and urine samples. This resource, if funded, would then be accessible worldwide.
The National Health Service (NHS), with the British Association of CFS/ME — whose members mostly work in specialist NHS ME/CFS clinics — would work with the researchers to recruit patients in NHS clinics across the country, Professor Holgate said.
He added that the recruitment phase would take “a couple of years” and would require the active participation of patients. A blog would be started over the next few months to attract patients’ interest, with scientists on the project explaining in lay terms what they were planning to do.
The project will be, Professor Holgate said, “a world first”, involving “some of the best researchers in the country” and the enthusiasm generated would be “enormous”.
ME/CFS is, he said, no longer viewed as a single disease-entity. The scientists plan to “use the modern ways of interrogating complex datasets” to help cut ME/CFS into subtypes, each of which might have different causative pathways and require different treatments.
Moving on to other matters, Professor Holgate confirmed that the next CMRC conference would be held in Newcastle on 28 and 29 September, and that a “very exciting” provisional programme had already been drawn up. Three workshops for patients are planned: one on participation in clinical trials, one on severe ME/CFS, and the third on POTS (postural orthostatic tachycardia syndrome, a form of orthostatic intolerance common in ME/CFS).
The conference will, he said, also include reports on completed projects that had been funded by the Medical Research Council; an update on the Grand Challenge; and a focus on the care of children with ME/CFS.
Continuing the meeting, Professor Holgate said that an industry member would be sought to join the board to help make contact with drug discovery opportunities that might arise from research.
Sonya Chowdhury of Action for ME noted that questions had been raised about a statement in the CMRC charter which states: “Members must… Not take part in the harassment or abuse of researchers including taking part in orchestrated campaigns against those conducting peer-reviewed research.” Ms Chowdhury said that the CMRC did not exist to “stifle scientific debate” and that a redraft would be made for clarification and circulated to board members for approval.
The statement has provoked anger among patients since the CMRC’s inception because it echoes language used by the PACE trial researchers in response to criticism of the study and is widely seen as attacking the right to criticise poor science. Professor Peter White, one of PACE’s principal investigators, was a member of the CMRC board when the charter was drawn up, but has since resigned. Professor James Coyne has said of the clause, “I’m not a lawyer, but I am a staunch advocate of academic and intellectual freedom and can recognize a threat when I see it.”
The CMRC was set up in 2013 to provide a mechanism for ME/CFS charities, researchers and clinicians to work together, especially to attract new funding to the field. The organisation’s launch proved controversial because the Collaborative included not only biomedical scientists but members of the biopsychosocial school of psychiatry responsible for studies such as the PACE trial.
The biomedical focus of the Grand Challenge, and the largely biomedical emphasis of the conferences has been encouraging to patients, but concerns remain over the influence of biopsychosocial protagonists in the organisation.
The meeting took place in London and was also attended by Dr Esther Crawley, Professor Hugh Perry, Jan McKendrick of ME Research UK, and Ed Sykes of the Science Media Centre.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the