Latest News

• ME could be in the genes

  During ME Awareness week (May 11 - 17 ) Sussex sufferers of the debilitating illness Myalgic Encephalopathy known as Chronic Fatigue Syndrome are welcoming news that British researchers could be close to developing, for the first time, a blood test and potential drug treatments for the illness following groundbreaking work on its genetic origins.

  ME/CFS affects about 6,000 adults and children across Sussex. It causes profound physical and mental fatigue and malaise for many months or sometimes decades along with sleep abnormalities, memory and concentration difficulties and pain. In its most extreme form, the disease leaves sufferers bed-ridden.

  But Sussex patients now have new hope, thanks to research published in the Journal of Clinical Pathology by Dr Jonathan Kerr of St George's University of London and his colleagues.

  The research team have identified 88 genes that produce different levels of proteins and other molecules in ME/CFS sufferers compared with the rest of the population.

  Dr Kerr's team carried out a complex analysis of the records of 55 patients and found that they could be divided into seven sub-types according to the specific gene combinations found in their white blood cells, and the severity of their symptoms. The most acutely affected patients had 71 of the 88 gene abnormalities.

  Colin Barton of the Sussex ME/CFS Society says: "The results of this work should allow better understanding of the causes and development of the disease. Many of the genes apparently are known to be affected when a person contracts a virus, a factor which is believed to trigger many cases of ME/CFS."

  Importantly, the researchers also recognised that five of the 88 genes are targeted by drugs which are already used to treat other diseases.

  The team is now investigating whether the faulty genes produce abnormal levels of proteins that can be detected as minute quantities of "biomarkers" in the blood of patients.

  "If proven to be sensitive and specific indicators of the illness, the discovery of protein biomarkers could lead to the development of a diagnostic test for ME/CFS, which would revolutionise our approach to this disease," explains Dr Kerr.

• Young People's Service Planned

  		During March, a meeting was held at the Royal Alexandra Children's Hospital in Brighton. Sussex & Kent ME/CFS Society are working with local paediatrician Kamal Patel and others who are preparing a proposal for Sussex PCT commissioners to consider for an ME/CFS service for children and young people. MaryJane Willows of AYME attended the meeting and four paediatricians from Sussex are happy to be involved. The proposal needs some more work before being submitted.



• South East Medical Conference

The Sussex & Kent ME/CFS Society is hosting a medical conference at Hove Town Hall on Friday September 26th 2008. The afternoon conference will cover diagnosis and management of CFS/ME and research as well as local NHS services.
		Dr Keith Hine Senior Sussex consultant (Chair)
		Prof Leslie Findley Leading consultant neurologist
		Dr Abhijit Chaudhuri Consultant neurologist and researcher
		Dr Kamal Patel Consultant paediatrician
		Dr Mike Broughton Clinical lead, Sussex CFS/ME Service
		Dr Des Turner MP Parliamentary Group Chairman
This conference is officially endorsed by Action for ME (AfME) and Association of Young People with ME (AYME)
Enquiries to: colin.sussexme@btinternet.com or 01273 674828