The CFS Research Foundation was launched in 1993 when a group of doctors and scientists decided that it was essential that a medical research foundation should be established to study the illness which appeared to be increasing in prevalence and severity. At the time CFS/ME and its sufferers were almost totally neglected by doctors and scientists.

In 1993 there was only a small amount of research into the illness and that was not of the highest standard. The situation was made worse by the aggressive attitude of many support groups towards scientists and to the medical profession as well as towards each other. Naturally researchers were becoming wary of being involved in research in such muddy waters.

The Foundation decided that a new attitude must be established so that CFS/ME was seen as a challenging illness which must be addressed with urgency by doctors and scientists. To this end the CFS Research Foundation decided that it should bring together the best minds to meet the challenge presented by this disease. A Research Committee was formed of scientists pre-eminent in their fields. They decided that the Foundation would fund research projects only if they were of the “gold standard”. Papers have been published following studies into different aspects of the disease and our knowledge has grown over the years.

Dr Russell Lane, in his neurological clinic in London, took muscle biopsies from patients with CFS/ME and those who also had psychological problems. He found that some of the CFS/ME patients had increased lactic acid production on exercise which caused muscle pain and fatigue. This group seemed to be largely distinct from those with psychological problems. This study was important at a time when so many doctors and scientists considered CFS/ME as a psychological problem.

Professor Len Archard and his team found evidence of enterovirus genes in the muscle of some patients. Later he identified the virus as related to the Coxsackie B3 virus. [1]

So the evidence for a biological cause of the disease was mounting. Two other studies provided even more evidence. In Glasgow, Dr Geoffrey Clements and his colleagues detected enterovirus nucleic acid in the blood of local CFS/ME patients.[2] In London’s Imperial College, Dr Jonathan Kerr followed up a group of his patients who had been infected by a common virus known as the parvovirus B19. He found that 13% had the symptoms of CFS/ME. He treated three of these patients in hospital with large doses of gamma globulin. All three recovered, the virus disappeared and their immune system returned to normal. [3]

In 1998 the Research Committee began to look at the influence of genes in the disease. When a person is attacked by a virus some genes become more active while others shut down. The overactive genes produce chemicals which cause the symptoms of the illness so the Foundation funded a project to look for evidence of some genes becoming more active in patients with CFS/ME. Dr. Rob Powell, first in Reading University and then in Southampton, carried out a study which yielded evidence that there were several genes in the patients with CFS/ME which became more active but remained normal in a control group. [4]

In the light of all this research, the mapping of the human genome and the rapid advances in sophisticated scientific technology, the Research Committee decided that it might be possible to study the basis of CFS/ME by examining the genes of patients and comparing them to those of a control group of normal healthy people. But they had to face a formidable challenge. Gene expression was being studied in research into many diseases but always samples had been taken from lesions.

There are no lesions in CFS/ME so the scientists decided to see if they could obtain results by using the blood from CFS/ME patients. A highly ambitious study was initiated with scientists from three laboratories in British medical schools and one laboratory in the USA.

This took a great deal of courage, it was always possible that this attempt would fail. It did not fail and the research group lead by Dr Jonathan Kerr were able to provide proof that 15 genes were over expressed and one under expressed. This changed research into CFS/ME worldwide. Until then various aspects of the disease had been examined, but now it was possible to research the basis of the illness. The news of this was caught up by the international media, radio stations, newspapers and tv programmes. Dr Jonathan Kerr was inundated by requests from scientists worldwide for more information and this led to research groups throughout the world initiating their own gene expression research.

References

[1] Lane R.J.M, Soteriou B.A., Zhang H., Archard L.C. Enterovirus related metabolic myopathy: a post viral fatigue syndrome. J. Neurol Neurosurg Psychiatry 2003; 1382-1386

[2] Galbraith D.N., Nairn C. and Clements G.B. Evidence for enteroviral persistence in humans. Journal of General Virology 1997; 78:307-312

[3] Kerr J.R., Cunniffe V.S., Kelleher P., Bernstein R.M., and Bruce I.N. Successful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19-Associated Chronic Fatigue Syndrome. Clinical Infectious Diseases 2003; 36:e100-6

[4] Powell R., Ren J., Lewith G., Barclay W., Holgate S., and Almond J. Identification of novel expressed sequences, up-regulated in the leucocytes of chronic fatigue syndrome patients. Clin Exp Allergy 2003; 33:1450-1456