On 30 October 2018, MPs Carol Monaghan, Nicky Morgan, Kelvin Hopkins and Stephen Pound appeared before the Backbench Business Committee seeking time for a UK House of Commons debate on ME. Their petition was supported by more than 30 MPs and the Backbench Business Committee allocated time, on 24 January 2019, for a full debate in the Commons Chamber on a substantive Motion, namely:
That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures.
The successful bid built upon two earlier debates in Westminster Hall. Such debates take place on ‘general debate’ motions, expressed in neutral terms but highlight an item of concern to MPs and allow debate and a response from an appropriate Minister. The first, on 20 February 2018, centred around the PACE trial: ‘I beg to move, That this House has considered the PACE trial and its effect on people with ME’ – Hansard. The second, longer, Westminster Hall debate on 21 June 2018 was secured by MPs Carol Monaghan along with Nicky Morgan and proceeded on a wider motion: ‘I beg to move, That this House has considered myalgic encephalomyelitis treatment and research’.
Thirteen backbenchers spoke eloquently at the June debate about the challenges faced by their constituents in accessing medical services, problems with the DWP, PACE Trial and the chronic lack of research into ME/CFS. At its peak, 25 MPs were in attendance.
Carol Monaghan, MP for Glasgow North West, in her speeches highlighted that:
- ‘Biomedical treatment for ME is woefully lacking.’
- ‘…almost all the biomedical research currently taking place in the UK is funded by charities and patient groups, rather than by the Government or research councils”.
- ‘The Minister (Steve Brine Parliamentary Under Secretary of State for Health), who is a compassionate person, talked about funding, and I think he said that the Medical Research Council is putting £2.6 million into ME research. Unfortunately, that is not for biomedical research –or little of it is.”
On the last point, Ms Monaghan was responding to the Minister having stated that
In research, the Government invest more than £1.7 billion a year in health research via the National Institute for Health Research and the Medical Research Council through UK Research and Innovation. The NIHR and MRC welcome high-quality applications for research into all aspects of CFS and ME, which would certainly include the biomedical research that the Hon. Member for Glasgow North West spoke about in her opening remarks.
Since 2011, the MRC has funded seven projects on CFS/ME totalling £2.62 million, and it is ready to support further applications of the highest scientific quality, which is required to make those scientific breakthroughs… The MRC has had an open cross-board highlight notice on ME since 2003. It was updated in 2011 alongside a bespoke funding call in that year. ME research remains an area of high strategic importance for the MRC. Applications that focus on the underpinning mechanisms of ME are encouraged, with priority areas including immune dysregulation… pain, improved sub-phenotyping and stratification of ME, and mechanisms of ME in children and young people… The NIHR has, since 2011, provided £3.37 million of funding for projects and training on ME. That might not be termed biomedical research, but as with other disorders, given that the cause and mechanisms of the condition are still poorly understood, it is important that we carry out both biomedical research, to further our understanding, and applied health research, to improve the treatment offered to people with ME now and to help to improve their symptoms and quality of life.
In 2012, ME Research UK pointed out that the award by the MRC of almost £1 million to Professor Julia Newton, Dr Wan Ng and colleagues (Newcastle Biomedicine, Newcastle University, UK) for two biomedical projects was a great boost for research into ME/CFS in the UK. The initial call for applications Understanding the Mechanisms of CFS/ME was issued by the MRC in February 2011, with a submission deadline in June 2011. In total, the MRC made five discrete grant awards under this call, at a cost of approximately £1.65 million.
As Prof. Newton stated
I am delighted at this outcome, which arrives after many years of hard work for my colleagues and myself. I’d like to particularly thank the charity ME Research UK. The charity provided the pilot/seedcorn funding for four distinct projects from 2006 to 2011, which have allowed us to accumulate the data on which these successful applications to the MRC were based. In addition, ME Research UK has supported our research programme in a variety of ways, not least by providing formal support letters for our grant applications to the MRC. The success of these applications shows what can be achieved by biomedical researchers working closely with the medical research charities in a supportive and collaborative way.
However, despite ME/CFS being ‘currently a highlighted area and a high priority for the MRC’, funding applications remain muted.
The challenge faced is that ME/CFS receives a disproportionately low level of funding relative to the prevalence and severity of the illness. The CMRC-commissioned ÜberResearch Report highlighted that approximately 250,000 people in the UK are affected by ME/CFS and, in 2006, the economic cost to the UK was estimated at £6.4 billion. The NICE Clinical Guideline (CG53) states: ‘The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions’. Despite this, the level of research spend per ME/CFS patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite being far less prevalent than ME/CFS.
Further, the ÜberResearch Report analysed (with caveats) research funding into the illness and found that centrally there were only 20 grants funded in the UK in the 10-year period from 2006 – with the Medical Research Council awarding 12 of these. Prof. Peter White (Queen Mary University of London and Barts Health NHS Trust) received most funding, more than £3.5 million. Prof. White and (now) Prof. Esther Crawley (University of Bristol, and Consultant Paediatrician) each held four grants as principal applicants – totalling £5.8m of funding. Thus, eight of the 20 grants awarded were held by two recipients and the remaining 12 shared the remaining £4.37m. Biomedical research is not at the fore.
ME Research UK’s then Research & Operations Director, Dr Neil Abbot, summarised the challenges facing ME research generally in his 2007 ‘Research Challenges in ME/CFS‘ article, the conclusion of which stated:
There cannot be many other illnesses in which so many unusual challenges stand in the way of ‘making the breakthrough’. The ideal scenario would be for central (e.g., MRC and NHS R&D) funding of biomedical research to be provided through a form of ring-fencing, making it much easier to entice good, established biomedical researchers into the field.
But this alone is not the answer. Experience has convinced us that the funding strategy for ME/CFS must mirror that of other illnesses such as cancer research which obtains most of its revenue from private sources and ground-level fundraising. It is a huge task, but much can be achieved by a determined and collaborative ME community.
We await, with interest, the contributions from MPs on the need for biomedical research during the debate on 24 January 2019, but more so the reaction of Ministers and funding agencies to the points raised. ME Research UK and its supporters have contributed so much to research and, with a parallel upswing in funding, stand ready to advance research even further.