This week’s column on ME/CFS

Last week I had the incredibly moving privilege to attend the screening of the film, Unrest, in Parliament. Unrest is filmed by an actual sufferer of myalgic encephalomyelitis (ME) whose body suddenly started to fail on her in her twenties.

Jennifer Brea was an active Harvard PhD student when she developed ME, also known as Chronic Fatigue Syndrome (CFS), and she was told at the time that it was all in her head and that there was nothing wrong with her.

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

However the effects of it are devastating, and Jennifer’s story really hits home how difficult life with the disease can be. It is clear that more needs to be done to raise the profile of this debilitating disease. Not enough money is being put into researching, and of the money that is being put in a large proportion is being wasted on psychiatric research about the disease rather than biomedical research.

There has been little success from psychiatric research, especially compared to the biomedical research that has been conducted in other countries.

As a consequence we are lagging behind other nations. NICE guidelines on the issue are dated and do not reflect the inroads that other countries have made in their research. For example, the anti-viral medication that Jennifer states in the film got her from bedridden to what she is doing now, is not available in this country.

As well as considering other methods of treatment, NICE need to ensure healthcare professionals at all levels are sufficiently educated so that they can adequately diagnose, treat and manage ME.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.