The rather foreshortened debate began eventually at 3.30pm and closed at 5pm on 24 January 2019 with the Motion being passed without a Division and without amendment. Regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.

On the positives, those MPs who spoke

1.Recognised the reality of the physical illness, the lack of care and the lack of official understanding of the illness – highlighted by Stephen Pound MP’s impassioned speech.

Source – parliamentlive.tv

2.Wished better education for GPs and raised concerns over use of child protection powers.

3.Stated that given the PACE trial had, in many ways been discredited, and the reported ill-effects of exercise on some ME patients ought to mean that CBT/GET be removed as a ‘treatment’ for ME/CFS when the current NICE Guideline review is completed in 2020. Some MPs asking for them to be withdrawn immediately, or at least a warning added to the current Guideline flagging up possible deleterious effects of CBT/GET.

4.Demanded that far more biomedical research be funded and pointed out the dearth of research given the prevalence and the severity of the illness.

Over-all, a notable wide-ranging summation of the issues raised by MPs was provided by Dr Philippa Whitford MP

Source – parliamentlive.tv

Responding on behalf of the Government, as he had done in the June 2018 Westminster Hall debate, the Under Secretary of State for Health and Social Care (Steve Brine) began by stating that

The Government do not for one-minute underestimate ME ……… the truth is that we do not understand the underlying causes, and there is no single diagnostic test to identify it. Although some patients — very few — improve and recover, there is currently no cure. We know that the condition has a devastating impact, and we have heard some stories about that today. It has a complex range of symptoms which cause great difficulties for physicians, including disabling fatigue, a flu-like malaise and neurological problems. We have also heard about the effect on families, friends, carers, schools and housing.

before giving the Government’s response to the points raised by MPs

Source – parliamentlive.tv

He pointed out the Royal College of General Practitioners includes education about the illness as a vital area of clinical knowledge that GPs should have as part of their qualifying exams; featuring it in the guidance for the applied knowledge test (a key part of those exams) and that the RCGP has also produced an online course on ME for GPs. He also recognised that once they are qualified, clinicians are responsible for ensuring that their own clinical knowledge remains up to date and that it is not for Ministers to go on educating GPs; that is one of the jobs of the RCGP — and for their ongoing learning. In anticipation of criticism of GPs, he announced that he had already spoken to the Chair of the RCGP, and asked her to come to parliament and that he would facilitate a round table discussion — perhaps involving a reformed All-Party Parliamentary Group on ME — but certainly involving Carol Monaghan MP.

On CBT/GET, he accepted that no form of treatment suits every patient and that the needs and preferences of patients should “absolutely be taken into account” and that “ME patients have the absolute right to refuse or withdraw from any part of their treatment;”. On the concern of MPs that the current review of the NICE guideline (CG53) will not be completed until October 2020 and that interim measures must be taken concerning the recommendation of CBT/GET as a ‘treatment’ he offered only to “look into” the possibility for an early statement from NICE, but cautioned that NICE “is an internationally respected independent organisation; and that the time allotted for the development of the new guidance will allow all the evidence to be considered and all the voices to be heard”.

Finally, on the need for research, and answering points such as those made by Kelvin Hopkins MP namely,

The impact on the lives of those constituents is enormous, but the cost to society and to the economy is over £3.3 billion a year — an enormous sum. Therefore, finding causes and discovering effective treatments are vital. Funding research must be a priority, first, to reduce the level of suffering, but also to reduce the wider social and economic costs. Research into ME represents just 0.02% of all grants given to funding agencies — just one 500th of the total, a pathetic amount that research spend into ME/CFS represents just 0.02% of all active grants given by the mainstream UK funding agencies or £1 per patient ….. We must congratulate the scientific and medical researchers who have done, and who are doing, so much valuable work towards finding solutions to the scourge of ME and alleviating the suffering that it causes. I hope that Ministers and other hon. Members will take note of the reports in “Breakthrough”, the journal of ME research [UK]

The Minister’s response to calls for more biomedical research was disappointing in the extreme and failed to grasp the realities of the research landscape in the UK. It is worthwhile quoting Steve Brine’s comments in full

As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research and the MRC through UK Research and Innovation. Together, the NIHR and MRC welcome high-quality applications for research into all aspects of ME, which would absolutely include biomedical research. The MRC has had a cross-board highlight notice on ME open since 2003, updated in 2011, inviting innovative research proposals, alongside a bespoke funding call in that year.
ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted. Members have said this afternoon, “We must surely fund more research,” but Ministers do not sit in the Department of Health and Social Care and decide on what to do research. One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding. The truth is — sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma …….. and partly because of the division in the medical community. We need people to come forward with good research proposals in this space; that can only be advantageous.

In the piece ‘Background to House of Commons Debate’ — which turned out to be prescient — reference was made to Dr Abbot’s comments as a conclusion to his study on funding for the illness.

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

The Minister’s example of the late Baroness Tessa Jowell is instructive. A few days after her death in May 2018, the government announced ‘The Dame Tessa Jowell Brain Cancer Research Mission’ which included a boosted research fund to consist of £65 million, £40 million in Government funding to be bolstered by £25 million from Cancer Research UK.

ME Research UK has an unrivalled reputation for funding research. It was ME Research UK study data after all that was used as the basis of the successful bid by Prof Julia Newton for MRC funding for her biomedical projects. The Minister’s comments vindicate the need to build a strong and diverse research-base populated by a flow of new-entrants to the field, to work collaboratively, and to be supported to the point where they can apply for central funding. That is how ME Research UK operates — seed-corn funding for scientifically sound research projects. Yet, relying solely on charity funding derived mostly from those affected by the illness cannot be the only solution.

What cannot be accepted is that, in any way, researchers bear any portion of blame for the lack of central funding. The Minister specifically acknowledged barriers to research input created by stigma surrounding the illness and of divisions within the medical community but provided no plan or commitment to tackle these — at whatever level or in any particular organisation. The issues are well known to Government. In fact, concerns were voiced in the Chief Medical Officer’s Working Group Report into CFS/ME back in January 2002 and so, regrettably, little appears to have changed:

During the course of preparing the report, the Working Group has continued to be concerned at the widespread controversy surrounding the existence and nature of CFS/ME. Patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition. The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconstant illness.

The matter was further commented on in the 2006 ‘Inquiry into the status of CFS/ M.E. and research into causes and treatment’ (the “Gibson Inquiry” Report) –

The CMO’s Working Group report came out in January 2002. Despite paying lip service to the need to advance the understanding of CFS/ME, the MRC itself has confirmed that from April 2003 to date, it has turned down 10 biomedical applications relating to CFS/ME because they considered they were not of high enough scientific standards to compete against the many calls on its funds. These included applications under the headings of pathophysiology, genetics, biomarkers, immunology and neuroimaging. By contrast, since April 2003 the MRC has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain (Professor Francis Creed, Professor K Bhui, Professor Peter White’s PACE trial, Alison Wearden’s FINE trial and Richard Morriss’ study of “medically unexplained symptoms”). These are to be welcomed of course since they are largely concerned with efforts to confirm or refute the nature of different forms of therapy in carefully controlled trials. However it is important for the MRC to be seen to be balancing this with support for more high quality basic research into potential causes.

Disappointingly, the Minister made no commitment to incentivise sub-MRC funded biomedical research (either alone or in partnership with charities) to the point where the MRC felt able to make a full grant. Such a stepped approach and acceptance of biomedical research as the key to understanding ME/CFS could also unlock corporate, trust and other funding which would, as in the case of Baroness Jowell’s brain cancer research, truly lead to a transformed research landscape.

As Carol Monaghan in her closing remarks made clear

On the question of medical research, I am sure that many researchers will have heard what he said. However, it is notable that although there is some excellent biomedical research going on just now, it is being funded by charities, and not by the Government. The Government need to take this seriously.

Carol Monaghan and other MPs are to commended for securing parliamentary time for this debate and for their dedication to raising awareness of ME in Westminster. ME Research UK calls on the Government to identify positive actions that will support researchers to develop the high quality applications that are being sought. Given the track record that ME Research UK has in this area, we would welcome the opportunity to discuss this further.

A full transcript of all contributions to the ninety minute Debate is available in Hansard and all contributions can be viewed on parliamentlive.tv

Information – In response to a question by Mrs Sharon Hodgson MP on 14th February 2019, Caroline Dinenage Minister of State (Department of Health and Social Care) stated –

“We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library

Financial Year£
2010-11189,438
2011-12381,874
2012-13501,461
2013-14561,950
2014-15426,055
2015-16475,676
2016-17554,785
2017-18464,902

The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.”