Sunday, 29 November 2015

Why the public opinion of M.E. needs to change

A few months ago I was at a wedding, and was taking to someone who I have known for years. They said that in their opinion ME is caused by depression. I was expecting this at some point throughout the day and tried to bat it off before moving on. But months later their words still haunt me, and so do those of doctors and other friends and family from over the years. Recently I have been asking myself 'why does it bother me so much when people think that M.E. is psychiatric?' At the end of the day whatever the cause it has still had the same impact on my life, and I try not to be affected by the stigma of mental illness because I know that it is real illness and never a choice (more on that in a follow up post).

I have realised that I find the misconception that M.E. is psychological upsetting for two reasons: 1 It holds back funding for biomedical M.E. research from being raised. 2 It has led to the development of harmful treatments which have damaged the health of me and many other people with M.E.

First the research aspect of it. The mental health label has served as a cheap way of dealing with M.E. sufferers for far too long. It has been an excuse not to put money into expensive biomedical research for M.E, as a 'valid' explanation of the disease has already been found. The last time that the UK government funded research into M.E. was in 2011 when a large psychological trial was done, the results supported the psychiatric hypothesis for M.E. Despite the fact that the results have never been successfully repeated, no healthy controls were used and the researchers did not disclose relevant conflicts of interest, the results have been used to shape the treatment guidelines for M.E. in the UK and many other countries. It is difficult to find out whether the UK government has ever spent money on quality biomedical research into M.E, there haven't been any well known studies and no funding has been put into M.E. since 2011.

The lack of funding has meant that patient groups have had to fund their own research, a slow and challenging prospect. It is very difficult to gain credibility and support for an illness which is widely believed to be psychosomatic. It is only now that that the scientific community are beginning to catch on. Some small studies have been carried out in the UK but not enough to gain momentum yet. We need GPs and the public to campaign for research.

Image source

Now onto my experiences with treatment methods which have made me ill in the past. I have often been told to push on through in an attempt to make myself more healthy, which has caused relapses. I have also been told to think more positively and ignore my signs of fatigue and pain, I was told that if I ignored them long enough they would go away. Thinking positively was one of my main strategies at university, this lead to my biggest relapse ever. I am now possibly more ill than I have been since the start of my illness, I am certainly not recovering at the rate I used to.

Another example of the way that this attitude to my illness has caused extreme payback was several years ago when I was advised by someone (I think it was a counsellor) who told me to wear a tight hair band around my wrist and ping it every time that I felt I couldn't do something, I was then supposed to carry on and just do it. The pinging sensation was supposed to teach my brain that those thoughts were bad and I was told that if I did it right then those thoughts would eventually go away. I didn't tell my family or friends that I was doing the 'treatment' because I didn't want them to get their hopes up or pressure me and keep checking in on me, but I really wanted to get better so I religiously did it. It is safe to say that this caused a relapse within two weeks. Not only had I caused myself unnecessary physical pain and a relapse, but I was running out of treatment options and had got my hopes up for no reason. It was a devastating experience, and many other people with M.E. have gone through similar things.

I don't get upset when people think that M.E. is psychiatric because of the stigma, I don't mind what people think of me. The reason that it upsets me so much is because it gets in the way of scientific progress, and means that other people are going to receive harmful advice. I can't stand the idea of either of those things. It never gets any easier to deal with the neglect that the disease has, and continues to face. It's the suffering of others that I can't handle. I used to think that the public opinion didn't matter and that "the truth will out" no matter what, but I have realised that public opinion is everything. Real change will only ever come from two things, public pressure on the government to fund research, and money raised for charity research. Both these things rely on large numbers of supporters which unfortunately M.E. does not yet have. I encourage you to challenge the idea that M.E. is psychiatric when you come across it, and to campaign for better biomedical funding. We need change! 

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