Unravelling the scientific basis of ME/CFS is no simple matter. Funding one-off investigations is important, but real breakthroughs in modern science come at the end of programmes of painstaking work by a specialist group of researchers. That’s why we’ve tried to give continuing support to key groups early in their investigations when it can be particularly tough to get funding – with fruitful results, as these examples show.
Newcastle University, UK
Prof. Julia Newton, Prof. David Jones and colleagues in Newcastle Biomedicine have been funded by ME Research UK and partners since 2006, and they lead one of the very few research programmes anywhere in the world on ME/CFS. Their programme is a rare example of a consistent, directed, problem-solving approach to tackling the illness, which has uncovered:
- Dysfunction of the autonomic nervous system in three-quarters of patients.
- An abnormal heart rate and impaired cardiovascular responses to standing.
- Lower blood pressure, and abnormal blood pressure regulation.
- Substantially slower recovery from exercise of skeletal muscles.
- Impaired cardiac function, including reduced cardiac mass and blood volume.
- A high level of misdiagnosis of ME/CFS in primary care.
- Distinct physiological and clinical differences between older and younger people with ME/ CFS.
As Prof. Julia Newton explains, “Since 2006, ME Research UK has provided the pilot funding for many distinct projects, which have allowed us to accumulate the data on which our successful applications to the MRC were based. Their success shows what can be achieved by biomedical researchers working closely with medical research charities in a supportive and collaborative way.”
University of Dundee, UK
The Vascular and Inflammatory Diseases Research Unit in Dundee has received a range of grants from ME Research UK in the past 12 years. In a step-by-step progression involving both adults and young people with ME/CFS, the group has reported a number of abnormalities:
- Unusual sensitivity of blood flow to acetylcholine.
- Increased levels of free radicals in the blood.
- An unexpected increase in apoptotic white blood cells.
- Increased cardiovascular risk factors with arterial stiffness.
- Biochemical anomalies in children mirroring those found in adults.
- An association between vitamin D and cardiovascular risk.
In Dr Faisel Khan’s words, “It has become clear to me over the years that vascular & inflammatory aspects of ME/CFS have a particular importance. Grants from ME Research UK have been the bedrock of our on-going research into the mechanistic pathways involved, and our applications to larger grant funding bodies have been based on the data accumulated with funding from the charity”.
Vrije Universiteit Brussel, Belgium
Since 2007, the group led by Prof. Jo Nijs in Brussels has received four separate grants from ME Research UK, and has produced a series of scientific papers and reviews showing that, compared with healthy people, ME/CFS patients can have:
- Increased sensitivity to pain throughout the body (‘central sensitization’)
- Abnormal central pain processing linked to post-exercise symptoms
- Immune abnormalities with similarities to cancer
- Dysregulation of intracellular immunity which impacts on daily functioning
- A lower peak isometric muscle strength and a reduced physiological exercise capacity
- Pain after both experimental and ‘self-paced’ exercise, even after 24 hours.
- Slower recovery in upper-limb muscle strength after exercise
- Increased oxidative and nitrosative stress, which may be involved in chronic widespread pain
As Prof Nijs says, “The funding provided by ME Research UK was of prime importance, helping the work of our ‘Pain in Motion’ research group to expand and to obtain funding from other sources, including the European College for Decongestive Lymphatic Therapy, the Research Foundation Flanders, and the International Association for the Study of Pain (the largest scientific pain society in the world) which awarded a prestigious Early Career Research Grant to Dr. Mira Meeus, ME Research UK Fellow”.