Dr Charles Shepherd speaks to the Telegraph about his own experience of ME and the major theories of the condition:
The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.
Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).
One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.
A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.
In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.
In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms? “The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.” He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity. “I go swimming and walking, but within the limits of what I can do.”
He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.
He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.
Read the full article: ME isn’t ‘all in the mind’, but it’s still a mystery
