During ME Awareness time the Sussex & Kent ME/CFS Society has come out tops at the Brighton Marina ASDA, where customers voted with discs for their favourite local charity most deserving of a cheque for £200.00 towards its' work.

Findings mark lauch of UK research consortium to advance studies into ME and CFS

The UK CFS/ME Research Collaborative (UK CMRC) is a new initiative led by the country's leading experts in the field to expand medical studies into this complex set of disorders by facilitating greater expertise and improved co-ordination of wide-ranging research activities. Researchers at the launch discussed some of the key issues they are facing and the areas that are making progress. They also explained some of their thoughts for future research and their latest preliminary findings.

Professor Stephen Holgate, Chair of the UK CMRC and MRC Professor of Immunopharmacology at the University of Southampton, said: "For the first time the research community and funders in the UK have joined forces in this unique new collaboration to create a step change in the amount and quality of research into chronic fatigue and ME. By coming together in this way, the application of state-of-the-art research methodology to this complex group of conditions will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets. The key to success will be the engagement of scientists outside the field."

Dr Esther Crawley, Consultant Senior Lecturer and advisor to the Sussex & Kent ME/CFS Society said, "CFS and ME can leave many people either housebound or confined to their bed for months or years, causing their lives to change drastically and continued employment to become impossible. We need to join forces with charities and funders to ensure we can best address the needs of patients suffing from this often life-changing condition which affects one to two percent of adults and teenagers in Britain."

Representatives from patient charities including the Sussex & Kent ME/CFS Society were present at the event, along with some of the UK's major researcher funders such as the Medical Research Council (MRC), the NHS National Institute for Health Research (NIHR) and the Welcome Trust.

Scientists studying the brain scans of ME/CFS patients have found they use additional brain regions to do simple memory tasks. This may explain the problems many sufferers have with memory and concentration. The findings were just one of several new studies presented on April 22nd at the London launch of a new UK-wide research body to advance understanding and treatment into this debilitating condition which affects over 13,000 people in Sussex and Kent.

Things have come some way since the days when Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) was considered a mystery. The debilitating and complex illness is now classified as a neurological disorder and there is a specialist NHS service in Sussex that has dealt with over 3,000 referrals since its inception in 2005.

Colin Barton, chair of the Sussex & Kent ME Society, was running a successful hotel business in 1981 when he became ill after contracting a glandular fever type illness that he never fully recovered from. "At one stage I was virtually bedbound and had to be helped around by our elderly housekeeper. I could not function physically or mentally for any useful period of time and had to give up my business when doctors were not sure what the problem was."

In 1987, Clare Francis, the novelist, went public about having ME, and recognising the symptoms, Colin was able to get referred to a specialist and diagnosed.

The NHS Sussex CFS/ME Service, that was set up with help from the ME Society, is staffed by a specialist doctor and a multidisciplinary team of six that offer confirmation diagnosis and management courses as appropriate considering guidelines issued by the Institute for Health and Clinical excellence (NICE).

Stress-response systems in people with chronic fatigue syndrome are signalling to the body that it is not safe to relax, creating a state of high alert that can be likened to post-traumatic stress disorder, new research suggests.

Researchers from UNSW have discovered for the first time that reduced heart rate variability – or changes in heart beat timing – best predicts cognitive disturbances, such as concentration difficulties commonly reported by people with chronic fatigue syndrome (CFS). This adds to the growing body of evidence linking autonomic nervous system imbalance to symptoms of this poorly understood disorder.

Chronic fatigue syndrome is characterised by medically unexplained, disabling fatigue and neuropsychiatric symptoms of at least six months’ duration. The disturbance underlying the symptoms in CFS is still poorly understood.

“We have studied autonomic function in CFS for some time and our findings clearly indicate a loss of integrity in stress-responsive neural and physiological systems in CFS. Patients with this condition are hyper-responsive to challenges arising both from within the body and from the environment,” says lead researcher, Associate Professor Ute Vollmer-Conna.

“Even when they sleep, their stress-responsive neural systems are on high alert, signalling that it is not safe to relax. I think this condition may be understood by analogy to post-traumatic stress disorder, just that in CFS the original trauma is most likely a physiological, internal one, such as a severe infection.”

In a study of 30 patients with CFS and 40 healthy individuals, UNSW researchers recorded the heart beats of participants (via ECG) and analysed cardiac responses to cognitive challenges, and associations with mental performance outcomes.

The patients with CFS performed with similar accuracy, but they took significantly longer to complete the tests than people without the condition. They also had greater heart rate reactivity; low and unresponsive heart rate variability; and prolonged heart rate-recovery after the cognitive challenge.

Resting heart rate variability (an index of vagus nerve activity) was identified as the only significant predictor of cognitive outcomes, while current levels of fatigue and other symptoms did not relate to cognitive performance.

“This is the first demonstration of an association between reduced cardiac vagal tone and cognitive impairment in CFS. Our findings confirm previous reports of a significant loss of vagal modulation, which becomes particularly apparent when dealing with challenging tasks. The current results are consistent with the notion that CFS represents a ‘system under stress’,” Associate Professor Vollmer-Conna says.

The findings could lead to new ways to improve cognitive difficulties in people with CFS, including biofeedback assisted retraining of autonomic functioning, the researchers say. The findings are reported in the journal PLOS ONE.