Myalgic Encephalomyelitis

Annette Brooke Excerpts

Wednesday 2nd February 2011 Westminster Hall

[Ian Swales]

I thank the hon. Gentleman; indeed, that is right. I am not sure whether no funding is available, but it certainly is the minority of funding, and that seriously needs addressing.

My goal is to see the Government-funded Medical Research Council work with ME sufferers and biomedical researchers to achieve a proper understanding of the condition’s challenges and to change the unjust perceptions of it.

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I congratulate my hon. Friend on securing this debate. It is almost a year since I had a similar debate, but I am not sure that we have moved on since then. Recently, the MRC announced £1.5 million for research, but does he agree that there appears not to be an overall strategy to deal with research into ME, and that there still seems to be concentration on the symptoms and not enough attention given to the causes?

[Ian Swales]

I thank my hon. Friend. Yes, the lack of a strategy focused on the latest information is one of the problems.

I was delighted that two days after this debate was announced, the MRC announced £1.5 million for further research into ME—I am sure that it was just a coincidence. That important step shows that leading medical researchers and the Government are finally admitting that current thinking on ME is inadequate.

The condition affects an estimated 250,000 people in the UK. It is not a disease of the elderly: onset commonly occurs during the 20s to 40s in adults, and between 11 and 14 in children, wrecking the lives of so many young people. Studies show that the vast majority of patients never return to their pre-illness level of functioning, and relapses can occur several years after remission. ME is an extremely complex disease for which there is no scientifically proven cause or cure. The main symptom is severe fatigue following almost any mental or physical activity which does not go away with sleep or rest. That often leads to its being defined under the term “chronic fatigue syndrome”. However, an important step in changing the misleading perceptions of ME is to recognise that CFS is a loose umbrella classification covering a wide range of illnesses of which fatigue is a prominent symptom, and that those illnesses may be neurological, malignant, infective, toxic, genetic or psychiatric in nature. Fatigue is a loosely defined symptom which can occur to some degree in a wide range of conditions.

Using that umbrella term has further compounded the already significant obstacles to the diagnosis and treatment of ME, which is now identified on the basis of at least nine different definitions. A major problem lies in the fact that different types of illness are also contained under the CFS umbrella. That makes sound scientific research difficult to conduct, as different illnesses have different biomarkers. A research group that consists of people with completely different physical and psychological causes of their fatigue or tiredness can have only limited use, and certainly cannot lead to the development of any sound findings on the causes of ME.

ME, on the other hand, has a clear definition. The term “myalgic” means muscle pain, while “encephalomyelitis” means inflammation of the brain and spinal cord and represents a clearly defined disease process which has been included in the World Health Organisation’s “International Classification of Diseases” since 1969. That poses the obvious question of why research has been mainly focused on psychological symptoms, when the very definition of the disease refers to a physiological condition. “Fatigue” is also a clumsy way of describing a complex range of extremely debilitating symptoms. It is not the kind of fatigue that non-sufferers would recognise. ME, as we heard from my constituent, can involve sudden and extreme muscle weakness to the point of not being able to lift a glass. What recognition is there in the Department that ME is distinct and different from the much broader term CFS? Equally, in the light of the recent MRC funding announcement, I urge the Minister to encourage the Department to focus its research, as treating ME/CFS as a single homogeneous condition will only encounter the problems I have just outlined.

That blurring can also lead to a uniform approach to treatment, which is unreasonable and even dangerous. An indiscriminate, blanket approach to treatment was advised by the National Institute for Health and Clinical Excellence in 2007, no matter what the disease process, infectious agent or psychological condition. Again, the symptom of fatigue gets flagged up and treated in the same way in nearly all cases. That can be ineffective for many, and positively dangerous for others. That lack of recognition of ME specifically happens at every level; yet I believe it essential that GPs have the ability to spot ME early and to prescribe appropriate, tailored advice. I would like the Government to recognise the many differences between and subtleties of ME and CFS, and urge the Minister to do the same, as the current treatment guidelines are completely unacceptable.

I decided to call for this debate because the issue has been under-researched. The lack of understanding and stigma surrounding ME have meant that sufferers have had to live with the condition without recourse to the treatments and research they deserve. I initially tabled early-day motion 778 to gauge support, and I am delighted to report that, as of yesterday, 100 colleagues from all parties have put their names to it. That shows the strong feeling in Parliament that significant changes need to be made. There has been a distinct lack of funding into ME research in the past decade. Between 2000 and 2003, not a single penny was spent by the MRC on researching the condition. Things did improve, peaking with just over £1.3 million allocated in 2007-08, but that dropped to just £109,000 in 2009-10.

I welcome the recent funding announcement. However, more than 80% of the MRC’s expenditure on ME research so far has been allocated to psycho-social therapies, instead of biomedical studies to prove the existence of a physical cause. That research has continued to pursue a well-trodden path and ignored a vast landscape of other, potentially more rewarding areas. I am concerned to see whether the new MRC funding will focus on that biomedical work. Not only has there been a palpable lack of funding for research; a past study commissioned by the Department of Health found that the quality of research was poor. For a long-term condition that affects 250,000 people in this country, with no known cause or cure and huge costs to the NHS, the amount of research funding dedicated to it, even with the recent announcement, is pitiful.

Misinformation, widespread confusion and ignorance about ME and CFS have resulted in people with entirely different illnesses receiving the same diagnosis. A London sufferer, David Eden, drew my attention to some interesting research that has been taking place in the United States. Recent studies by the Whittemore Peterson Institute, the National Cancer Institute and the Cleveland Clinic have linked ME with the presence of a newly discovered retrovirus. Blood from 68 of 101 ME patients was found to contain a human gammaretrovirus, xenotropic murine leukaemia virus—XMRV—while only eight of 218 healthy patients were found to have the same retrovirus. While that result grabbed headlines, most subsequent studies have been less clear, although one other study did support the original findings. It remains uncertain as to whether XMRV is linked to ME and is involved in causation. I would like to encourage the Minister, therefore, to explore other areas of research, such as retroviruses, in order to ascertain once and for all whether they play a part in ME. To judge by the contact I have had with sufferers, there is constant frustration that the Government are failing to fund research into key areas.

Another, more practical consideration is the recognition of ME by the benefits system. Currently, disability living allowance is assessed by severity of condition, and ME is treated like the vast majority of other conditions. Due to the lack of overt clinical findings, much of the assessment rests on anecdotal evidence and whether the person’s description of their disability is consistent with their daily activities. However, despite the guidance on conducting these interviews, an ME sufferer will only be able to attend such a session on a good day. It is therefore impossible to judge accurately the severity of the condition at the assessment interview. I would argue that a more flexible approach to ME is needed. The effects of the condition can wax and wane unpredictably, meaning that often, a person’s DLA is withdrawn because of a short-term respite of the symptoms. There needs to be more consultation with and input from GPs and other medical professionals who are in contact with the individual over a prolonged period. Obviously, I understand that this issue is not directly the Minister’s responsibility. However, I strongly urge him to make representations, and to make this case, to the Department for Work and Pensions.

I thank hon. Members and the Minister for listening. To end the plight of ME sufferers, appropriate and correctly targeted biomedical research into the causes of the disease must be funded. GPs must be properly apprised of the specifics of ME; sufferers’ disability must be recognised in the benefits system, with the support of GPs; ME and CFS must be properly classified; and fatigue must no longer be used as a catch-all symptom. The current situation, which has endured for decades, cannot be allowed to continue. As things stand, 250,000 men, women and children, their families and carers, face terrible injustice and neglect. I call on the Government to put that right.