Steve Brine MP

Department of Health and Social Care

 13th July 2018

Dear Steve,

I am writing further to the June 21^st debate about ME/CFS treatment and research led by Carol Monaghan MP, as whilst I was unable to attend this is an issue in which I have a long standing interest as a patron of Sussex & Kent ME/CFS Society.

As you will be aware, ME/CFS is a complex and often misunderstood disease that affects 250,000 people across the UK and costs the economy an estimated £3.3 billion per annum. This letter is to highlight the need for increased funding in order to improve understanding and treatment, as well as to highlight that research funding to date has been weighted towards psychological and behavioural studies. This is hugely valuable but has been to the exclusion of biomedical research that is essential to having a clearer understanding of the causes of and possible treatments for ME/CFS.

Less than £1 is spent annually on each individual suffering from ME/CFS – and much of that is provided by the charity sector. As an example of how ME/CFS sufferers are losing out, it’s worth noting that 2 and a half times more people suffer from ME/CFS than suffer from MS, yet MS receives 20 times more funding.

I welcome the news that we can expect an update by the end of the year on discussions between NIHR, MRC and the UK CFS/ME Research Collaborative and patient representatives about how they can best support a joined-up approach to high-quality research into this complex disorder. Please can you confirm the Government’s intention to make the required funding commitment to realise the various research needs that might be identified, and to invest more widely in some of the priorities raised during the debate.

Although the Medical Research Council invested £1.6 million in biomedical ME/CFS research in 2012, no funding has been used for biomedical research since. The current research programme at Bath University, for example, which you cited, is led by the department of psychology instead of a biomedical science department.

You are aware too of the controversy surrounding the PACE trial and subsequent trialling of different therapies including GET and CBT. Until the causes of ME/CFS are known, there’s an ongoing risk that patients will be treated using inappropriate therapies. Research conducted in the US Centres for Disease control and Prevention has abandoned GET treatment for ME/CFS patient’s and it’s wrong that the lack of properly funded research here in the UK is impacting on effective treatment.

I agree with your comments that we should not neglect applied health research but at present biomedical research is severely lacking and that must be addressed. It’s critical that Government funding is directed at improving treatment for ME/CFS sufferers and I’d appreciate confirmation that you will be taking steps to ensure this is the priority going forward and working with the CMRC to that end.

Another area of ongoing concern is lack of awareness and understanding, which colleagues detailed very powerfully during the debate.

A good number of people battling with ME/CFS are struggling to access the welfare benefits vital for covering living costs and the additional costs of their disability. If assessors do not have a reasonable understanding of ME/CFS, they cannot carry out accurate assessments. Symptoms of ME/CFS can be invisible and tend to fluctuate. Action for ME conducted a survey that found 79% of sufferers felt their assessor had insufficient expertise to conduct an effective and appropriate assessment.

Whilst I appreciate your comments during the debate about healthcare professionals being required to read an evidence-based protocol on ME/CFS as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition, this is clearly not enough. Funding needs to be urgently directed towards continuing and improved education – for healthcare professionals and for those involved in decision making that affects ME/CFS sufferers. I’d also welcome awareness raising aimed at employers and in schools too. There’s some ongoing stigma associated with ME, including an unjust perception that ME/CFS suffers are ‘lazy’ or not that ill. Funding needs to be made available now to address this and other ramifications of the ongoing uncertainty about ME/CFS’s causes and the best forms of treatment.

You will know that during debate colleagues made the case for increased funding for ME/CFS hospital services, noting that only one hospital has dedicated in-patient beds to manage and assess patients who need to be admitted.

Sussex & Kent ME/CFS Society pay tribute to the services the NHS currently offers and make the urgent case for these being expanded more widely. Their chair said the following:

“There are around 50 specialist NHS centres across Britain staffed by doctors, physiotherapists, psychologists and occupational therapists. These services – set up when the Department of Health provided £8.5 million for the purpose in 2005 – deal with around 11,000 new referrals a year and have seen well over 120,000 patients so far in England alone. Although not having all the answers to this complex illness, these multidisciplinary teams are helping many towards improved health. There is a desperate need for further funding to expand these vital services.”

Your recognition that access to services for those with severe ME/CFS is a big and ongoing issue is very welcome but I disagree that passing the buck to local NHS Commissioners is the solution. The Government needs to take responsibility and I urge you to make further investment in addressing service gaps so that patients’ needs can be properly met.

Colleagues speaking during the debate welcomed the establishment of the ME/CFS research centre in Norwich, funded by patients and their carers, and identified it as a possible focus for future government investment.  I would be interested in your further thoughts on this possibility once you have found out more from Henry Bellingham MP.

Yours sincerely,