It was heartening last week to read about the millions missing march. I had no prior knowledge of the event, a friend simply forwarded me a link about the march. We both have a mutual friend who has been having a very difficult time for the past two years dealing with ME and we have talked about the subject on a few occasions.
This year, in which the British public have been fed a constant barrage of xenophobia by its newspapers and politicians based on a perceived and hypothetical threat, it’s nice to see another very real issue, largely ignored by government, given importance by the public worldwide.
This isn’t just about raising awareness for ME, it’s also a worldwide protest about public spending. In the UK for example, research is underfunded at a time when David Cameron is spending 9 million of the UK taxpayers’ money on handing out leaflets (Not that that should give leave EU anything to hang on to).
ME isn’t the only illness for which research is underfunded. An indicator of this is the 10/90 research gap, which refers to the finding that only 10% of the US$55 billion global spending on health research is devoted to diseases or conditions that account for 90% of the global burden of disease.
Anyway, in the spirit of raising awareness, here are a few things that the march has helped to bring to light for me:
Should it be called chronic fatigue? Rivka Solomon says that “labelling ME as chronic fatigue syndrome gives doctors, the media, the public, and even family members permission to assume individuals are exaggerating, that [they’re] simply refusing to pull it together.” There is an ongoing debate about the naming of the disease and it seems that some people believe the moniker “chronic fatigue” stigmatises people who have the illness.
The Psychologising of ME is harmful. This was particularly interesting to me. Very little is known about what really causes ME. There is no conclusive diagnostic test and ME has similar symptoms to other illnesses, such as coeliac disease and multiple sclerosis. Diagnosis, therefore, is carried out through a process of elimination and can often take years.
The disease is so connected to the brain doctors often initially prescribe treatments such as CBT (cognitive behavioural therapy). This suggests that ME has a phycological basis and is linked to depression. This all ties in with the stigmatising of ME and the fact that it is not being more widely researched as there is a misconceived notion that people can simply “pull through”.
However, there are even two sides to this aspect of the illness. And Emily Beardall for example, feels that the phycological aspect of the disease is important and has been misconstrued. She says that, “it’s not about psychologising M.E., it’s about acknowledging the psychological burden of living with a physical LTC”.
The millions missing march should be commended for bringing to people’s attention a serious illness, whilst also seeking to make accountable those who decide what is deemed worthy of public spending.