Are you new to ME?


ME has been around for a very long time. We think that Florence Nightingale had it; International ME day is held on her birthday, May 12th. It is also possible that Charles Darwin had it, so you are in very good company.

The term "Myalgic Encephelomyelitis" appeared first in The Lancet after work by Dr Melvin Ramsay on an outbreak in the Royal Free Hospital in London in 1956: the term refers to inflammation in the muscle and brain. It has had many other names, from all over the world. Support ME has an informative page on this.

There are several different checklists of symptoms for ME (known as criteria), and Invest in ME have a useful summary here. There will be people who seem to fit one set of criteria, but not another, and that is part of the difficulty in sorting out the illness.

The rest of the world call this illness Chronic Fatigue Syndrome (or CFS). In the UK, in the 80s, a small group of psychiatrists created a new, wide-ranging set of criteria (unexplained, sudden onset, severe fatigue lasting at least 6 months with no medical diagnosis found) and called that CFS. Only psychiatrists and psychologists in the UK use this for their studies: everyone else regards it as too broad and not CFS. This new label would include people whose illness had not yet been diagnosed (most commonly, problems with the heart/circulation, or sleep apnoea), those whose fatigue was caused by psychological problems and "burnout", and, disastrously, ME. I would estimate that less than half the people now classified as having CFS in the UK actually have ME, which causes a lot of misunderstandings, especially when it comes to "miracle cures".

Normally, with a complex disease like ME, government bodies, like the Medical Research Council, would encourage and fund exploratory studies, supported by the charities, and eventually big pharmaceutical companies would get involved. ME is, as far as I can tell, unique because despite there being perhaps a quarter of a million people in the UK with the diagnosis of CFS, government funding both in America and in the UK has been very poor, and probably 80% of that relatively small amount has focused on psychosocial studies.

£5 million was spent on the PACE trial, first published in 2011, and, every year since then, further bits of analysis of that data have been published. This study was based on the unfounded supposition that, however ME is started, either fear or lack of exercise is the main factor for it continuing. It tested whether Cognitive Behaviour Therapy was useful, and whether Graded Exercise Therapy would prove to be a cheaper but equally effective treatment. A group of us with scientific backgrounds spent time analysing this trial, and there are a series of simple, animated videos that explain how poor and how misleading it was. Sadly, this psychological interpretation of ME is still favoured by many medical professionals, generally the ones who insist on using the name CFS. Of course there is a wealth of evidence that they are wrong.

Charities have funded a number of biomedical studies, finding abnormalities almost everywhere they looked! Two examples can give you an idea of the range of problems: a study at Stamford University found abnormalities in the brain's white matter in people with ME (the white matter is connecting tissue that links together different areas of grey matter), and a study at Newcastle University found that muscle tissue from people with ME produced, on average, 20 times as much acid as healthy tissue when exercised (no wonder it hurts!). It is now suspected that ME passes through three basic stages: the first is generally some form of short-term infection or other trigger that kicks off the whole process: the second is where we suffer a wide range of pretty awful symptoms, while the standard blood tests show nothing unusual happening, but deeper testing shows all sorts of abnormalities in the immune system: then after 3 years, deeper testing seems to show a different balance of abnormalities

Some of the studies can be very complex, but one way to find out more is to look at sources that translate recent findings into more understandable language. A number of sites do that: the home page for Phoenix Rising, and Cort's Blog "Health Rising" are easier to read.

Although there has been a historical lack of biomedical research there is a steady increase in the amount of research now being done, although this is still mainly funded through patients/charities or crowd-funding. However, on a more positive note more and more top scientists and researchers are being drawn to the field including Dr Ian Lipkin from Columbia University and Dr Montoya from Stanford University. As more biomedical research is done and distinct bio-markers are found, this is having a snowball effect, with more funding being directed to this much neglected disease.

If you wish to raise money for research, there are a number of different charities, each with a different focus: ME Research UK has been running since 2000: Invest in ME, is a newcomer, focusing exclusively on biomedical studies. The two major ME associations also fund research, although there is dissatisfaction amongst some patients that they have not done as much as they should to counter the over-influence of the psychiatric lobby. Action for ME funds some studies directly: the ME Association, has its own Ramsay Fund. Both the ME Association and Invest in ME are run by volunteers, so none of the money donated goes on salaries.

There are also a number of groups trying to raise money for these charities, such as Walk for ME, Let's do it for ME, and Make ME.