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Summary of Talk by Dr Charles Shepherd to
Network MESH West London on 23 October 2012

Dr Charles Shepherd, Medical Adviser to the ME Association, gave us a most interesting and comprehensive talk on ME at our AGM this year, starting off with the history and then spending much time on the various biomedical research projects that are now thankfully underway to look at various aspects of what everyone agrees is a highly complex illness — or group of illnesses — with no simple answers.


He began with his own personal history in the context of what was called the Royal Free Disease (what later became to be known as ME) in 1955. When he was at medical school in the 1970s a paper appeared in the British Medical Journal that ‘concluded that Royal Free Disease (Myalgic Encephalomyelitis) was all hysterical nonsense. So doctors like myself — and doctors I think for many years to come — left medical school with a very sceptical view of this illness. I certainly left medical school with the idea that it was hysterical nonsense, that I was never going to see a case of it and I might as well go away and forget about it. It was not until I was in my late twenties that I was working in a hospital and I caught a very nasty dose of chicken pox from one of my patients. I got a mild chicken pox encephalitis, an inflammation on the brain associated with the chicken pox. That is how I got involved with ME/CFS. I developed this chicken pox encephalitis. I was really quite poorly with it. I could not recover from it. I got all these typical ME-type symptoms. I went round a series of doctors, trying to get a diagnosis as to what was wrong. I got all kinds of explanations. It wasn’t until I met up with Melvyn Ramsey that he diagnosed my case of ME. So I have been involved with this illness now for about 30-odd years.’


One of the big issues besetting ME is a lack of a suitable definition. The problem is that different groups of patients are selected by different research studies and clinical trials. One thing that needs to be sorted out if progress is to be made — and it is something the Medical Research Council (MRC) Expert Group set up to promote more biomedical research feels very strongly about — is the need to start sub-grouping the people who come under the current very messy ME/CFS umbrella. He went on to explain how the original MRC group has developed into something bigger and broader in scope. ‘In December 2011 five grants totalling £1.6m were awarded. In October 2012, which was only a couple of weeks ago, as part of the momentum to keep this going we had a meeting with Professor Steven Holgate at the Royal Society of Medicine. We have decided now to set up a UK ME/CFS collaborative, which will be an on-going group — a much wider group — which will bring in research-funding charities and other research-funding organisations — new researchers, existing researchers, people from the pharmaceutical industry — everyone who really ought to be involved in getting research, and research infrastructure, into this illness moving forward in the UK. We set about thinking what are the research priorities. These are the things we identified. We go back to autonomic dysfunction, cognitive dysfunction, problems with memory, concentration and fatigue.’


He then went on to talk about the ME biobank which the ME Association, Action for ME, ME Research UK, and a private donor, have set up at the Royal Free Hospital and University College, London. This has now been running for about a year. They have collected 60 to 80 blood samples from people with very, very well-defined ME. They have also collected a vast amount of clinical data on these people, their investigations, their clinical symptoms and examination findings. So all this information accompanies these blood samples. It cost £160,000 to set up and is costing about £160,000 to keep it going for a second year. In the second year, the hope is that they will obtain another 100 samples, which will mean that people who want to do research on ME will be able to do so, just by acquiring blood samples. They will not have to go and find patients with this illness, and collect lots of clinical data. The patient data and blood samples will be available for them to use. And they will also be able to coordinate with other blood sample biobanks in other parts of the world, if they wish to do so.

Dr Shepherd then talked briefly about symptoms and drugs that can help to combat these. He also went on to mention Rituximab and the very interesting Norwegian trial. He and others are keen to get a larger clinical trial going of this drug but it is an expensive exercise and it is not easy to find a good team of scientists who will do the quality job that is needed if it is to be accepted.


He also mentioned the work he and the other ME charities have been doing to persuade the DWP how inappropriate the current Work Capability Assessment is for assessing those with ME and, indeed, anyone with a fluctuating condition, not just ME. Proposals have been made to make the test less onerous for people with ME and these will soon be tried out by the DWP. If they are shown to be practical in their application, he is hopeful that, sometime next year, ministers can be persuaded to change the WCA to reflect them.


After the break, Dr Shepherd answered a wide range of questions for forty minutes.


With thanks to Tony Golding, Chair of Network MESH West London Group.

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