In early 2014, ME Research UK reached a milestone, topping the £1 million mark in grants awarded to researchers. This represents 35 specific biomedical projects, the results of which have now been published as 58 research papers in peer-reviewed scientific journals. We can be proud of this record, and we know that none of it would have happened without the hard work and generosity of patients, their families and friends, and other ME organisations (such as the Irish ME Trust, the John Richardson Research Foundation, and Irish ME/CFS Association) sharing our belief in the need for biomedical research. To mark this achievement, we have produced a special 32-page edition of Breakthrough magazine, entitled ‘£1 million of biomedical research’.
To download a copy of the magazine, click here
Written in plain English, its aim is to give non-scientists an easily digestible overview of the research we have funded over the years, alongside a list of the projects and the scientific papers published. It also discusses some of the less well-known aspects of research funding, such as the need for programmes of research that continue year-on-year. The research is classified into subject areas to illustrate the breadth and range of the scientific work, as the contents illustrate:
- Genes and systems analysis
- Definitions and diagnosis
- Circulation and the blood
- Clinical trials and therapies
- Brain and nervous system
- Exercise and muscle
- Pain and sensitivity
- Children and young people
- Research infrastructure
- Programmes of research
Our research has taken place at institutions in the UK and overseas, and has involved many of the systems of the body. To date, the most important findings have centred around the autonomic nervous system, which controls some core body functions such as heart rate, digestion and breathing; the immune system, which protects us from infection; the circulatory system, particularly the heart and blood vessels which supply oxygen to tissues; and the musculoskeletal system, which is a source of pain and fatigue for many people with ME/CFS. As the body works as a single functioning unit, however, the research findings on one system of the body can also apply to another (immune cells are carried in the blood circulation, for instance). This is why different aspects of a particular study are sometimes mentioned under other headings in this special edition of Breakthrough magazine.
It is worth remembering that without our involvement, impetus or funding (alone or with partners), most of the studies described in the magazine would never have taken place. For instance, Prof. Julia Newton’s research on autonomic dysfunction at the University of Newcastle would not have begun and flourished into the much larger programme we see today; and the Vascular and Inflammatory Diseases Research Group at the University of Dundee would not have uncovered a range of abnormalities in blood and blood vessels. Similarly, Prof. Jo Nijs’ programme in Belgium that is focused on exercise, immunology and its consequences, as well as single investigations such as the exploration of retrovirus in Swedish patients or the experience of pain in Scottish patients, would not have been instigated or completed without our financial assistance.
So, what does our overview ‘£1 million of biomedical research’ reveal? Well, the most important lesson is that physiological abnormalities and biological anomalies can be found in ME/CFS patients if scientists have the funding – and the drive – to uncover them. For too long, the prevailing wisdom among some policy makers and healthcare professionals was that scientific investigation was largely unnecessary, since the primary disturbance in people with ME/CFS was psychological. We now know this to be false: scientists can certainly find physical abnormalities – e.g. autonomic nervous system dysfunction, neutrophil apoptosis, arterial stiffness, impaired recovery from exercise, increased oxidative stress – and nonspecific psychological therapies are not cures.
Our research overview also points up a crucial fact – that biomedical research is a long-term enterprise, involving decades-long commitment by researchers and funders. This is true for all chronic illnesses, but particularly for ME/CFS which has a surprisingly meagre research base. As the stark figures reveal, the Pubmed research database presently lists 106,120 articles on type 2 diabetes and 60,480 on multiple sclerosis, compared with an all-time figure of just 6,410 for ME/CFS (which is twice as prevalent as multiple sclerosis). This is why scientific progress sometimes seems to be glacially slow, but it is also why, nolens volens, building a global biomedical infrastructure is an absolute necessity. Most often, it’s only after a critical mass of investigators has produced a critical volume of biomedical data that patterns begin to emerge and fruitful leads begin to become apparent. Of course, it’s also important to maintain support for current researchers; funding one-off investigations is one thing, but real breakthroughs in modern science, particularly those on chronic diseases, come at the end of longer programmes of painstaking work. That’s why we’ve tried to provide continuing project-on-project support to specialist groups of researchers early in their investigations when it can be particularly tough to get funding.
The key to progressing biomedical research is funding, plain and simple. It is very hard for researchers to get class 1 funding (from sources like the MRC, NIH or NIHR) which is highly competitive, tends to be one-off, and often requires applications based on pre-existing pilot data. That’s why they rely on charities; in fact, a significant proportion of research funding for all diseases comes from charitable sources (£1.1 billion each year in the UK alone). This is what makes the role of ME Research UK so important. We have we funded more specific biomedical projects on ME/CFS than any other organisation outside of North America, and are proud of what we have achieved, but we need to get cracking on raising the next £1 million.
Please help us if you can.