It ought not to be controversial to suggest that the health and wellbeing of all citizens should be at the forefront of the Chancellor’s mind as he prepares his Spring budget.
That’s why I’m calling on him to consider the state of services for those with M.E., also known as Chronic Fatigue Syndrome, and the funding for research into its causes and treatment.
M.E. affects at least 250,000 people in the UK. But underreporting means the true figure may be well over a million.
These people need care, compassion, and the condition needs proper funding. They also need allies. That is why I am delighted to become an official parliamentary champion for the charity, Action for M.E.
If funding for M.E. research was equitable with other illnesses only £18.5m of the £5billion annually spent on health research would be needed per year in addition to an upfront investment to redress the current inequity. Charities such as Action for M.E. have been calling for adequate funding for over 30 years yet it has not been forthcoming. As a result, still so little is known about the disease and its causes, and there remains no cure. Many people living with this condition remain trapped in their homes with one in four people so severely affected that they are bed or housebound. Figures from 2017 suggest that M.E. costs the UK economy £3.3billion per year. Given research indicates about 50% of people with Long Covid have symptoms that directly mirror M.E., a total of 1.3m people could be costing the economy at least five times that.
But those numbers are meaningless against the toll M.E. takes on those who have it and their loved ones. A recent Channel 4 report exposed the heartbreak of families who must invest time and love into caring for sons, daughters, sisters and brothers with M.E. and also effort into being taken seriously by society and the medical profession in particular.
Initial research suggest M.E. disproportionately affects women. By prioritising research into this neglected illness, we can address health disparities and ensure that all individuals receive the care and attention they deserve, regardless of their background or circumstances.
The case for investing in M.E. research is rooted in health equity and social justice.
But this is not a party political point. It rises above that. This is about people. People who for too long have been marginalised and left behind.
The human cost of this disease cannot be overstated. M.E. can leave individuals bedridden, in constant pain, and unable to perform even the most basic daily tasks. Yet, due to a lack of effective treatments and understanding, many patients struggle for years without adequate support or medical care. In addition, they also face stigmatisation fuelled by the fact that so little is still known about the disease. Investing in research is about far more than just scientific discovery; it’s about improving the quality of life for those living with this debilitating condition and, finally giving them hope for a better and more equitable life.
There is a ground-breaking study happening in Edinburgh at the moment looking into the genetic causes of M.E. The DecodeME study, the largest of its kind, has already made some important and startling discoveries. It has found that women who have had M.E. for more than 10 years are more likely to experience a higher severity of symptoms. It also confirmed the long-held belief that M.E. disproportionately affects women. This research is a step in the right direction but, only four projects have been funded over the last 10 years. In that time, only £8.05m has been spent. In terms of health spending that’s not a lot. But even that investment could’ve been better spent if it was backed by a long term vision, a coherent strategy and the will to lead the world and get to the bottom of what causes M.E and how to treat it.
The DecodeME study will soon be coming to the end of its funding cycle and still the data that will unlock the cause and effective treatment remains elusive. It is imperative that funding continues for vital projects like these. The Government published an ‘Interim Delivery Plan on ME/CFS’. That needs to be followed up with action. I hope to see the final plan implemented at once and its promises to people with M.E. kept.
The Chancellor must seize the opportunity presented by the upcoming Spring Budget to prioritise funding for M.E. research. Doing so is not just a matter of compassion, but of fairness and morality. It’s time to take a stand against the devastation caused by M.E. and invest in a brighter, healthier future for all.
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