So, M.E was in the news a lot yesterday. It's rare for it to have such attention paid to it by the media, so often we have to fight to be heard, yet yesterday it seemed you couldn't escape it. Normally I would say this was no bad thing, after all, just mentioning the illness on radio or television may be enough to bring it in to people's consciousness; people who would otherwise be oblivious to it.
Let me start off by saying that in my house, Radio 5 is the radio station that pretty much every radio in the house is permanently tuned in to. We're a big sporting family (well, not myself for obvious reasons!) but everyone likes to be up to date on football and cricket results, as well as listening to their usually brilliant news coverage.
So yesterday morning, as usual, I come downstairs to find my mum in the kitchen, radio on whilst I took a seat in the living room, where I could still hear it. I'd read some things on twitter whilst still upstairs in bed about the coverage that had been on Radio 4, which sadly I didn't manage to hear, but will try and look up online. Then, Radio 5 move on to a discussion about M.E, and I'm all ears.
They started by talking to Esther Crawley, AYME's medical adviser, who has been the subject of death threats due to the research she takes part in. That is truly horrifying, and I am disgusted that people would go to those lengths to voice their disagreement, however strongly they feel about the research being undertaken. People who are behind such threats give a bad name to the M.E community, which is a strong one, and has a very big online presence. Whilst we fight to be heard, these people are giving all of us a bad name.
The dilemma with M.E research is that so much of it seems to be psychological, which lead to the next topic of discussion on the radio. Let me state quiet clearly that M.E is NOT a psychological illness, and has been recognised by the World Health Organisation as a NEUROLOGICAL condition. The problem, however, lies with the continued lack of understanding from members of the public, right up to people in the medical profession, who often refuse to accept this fact, and therefore disregard the illness or treat it as a psychological problem. There is no test for M.E, and so much in unknown about it, and it seems for some doctors that means a problem for them.
So I was disgusted when, once the presenter started taking calls from members of the public, she started grilling them about why they had a problem with M.E being labeled psychological. According to her, it is because there is a negative stigma associated with mental illness, and we don't want to be associated with that. Is that the reason? NO. The reason M.E patients do not wish to be, and should in no case, be classed as psychologically ill, is because M.E IS NOT A PSYCHOLOGICAL ILLNESS. Think of it like this. You break your leg. You can't walk and are in horrendous amounts of pain. So you go to the doctor, only for them to turn to you and say "I'm sorry, I can't help you because you don't have a physical problem, it's a psychological problem you have, it's all in your head." That would be completely unacceptable and wrong, yet this is exactly the kind of treatment M.E patients are subjected to. They have a physical illness, recognised by the WHO and yet are faced with being treated as a psychiatric patient.
To be honest, that is when I turned off the radio. After listening to the presenter speaking to M.E sufferers, and their families, and insisting that maybe the problem we has is that we were prejudiced against mental illness and that's why we weren't happy with the psychological research, and being treated as psychiatric patients, I got so angry I turned off. I have no idea how that segment ended, but in my opinion, the damage was already done.
I would just like to state, for the record, that I have no issues with mental illness. I would never trivialise it, or treat people suffering from mental illness as any kind of lesser being. I understand how devastating mental illness is. Why? One of the people closest to me in the world suffers from depression and anxiety, and I see what she goes through and the scars she bears (literally). I have seen people close to me go through eating disorders, and I understand how horrific an illness anorexia/bulimia is. If I had a psychological illness, my experiences with these people close to me would help me to recognise that, and I would do anything to try and help myself, because I've seen how lives can be nearly lost through mental illness. But at the end of the day, I don't have a psychological illness, I have a physical one, which is why I deserve to be treated in a way that is appropriate for the recognised condition I have.
Yes, M.E research has been focused on psychological treatments, something I neither agree with, or would ever take part in. I believe bio-medical research needs to be the focus if we are to ever get some kind of cure. But death threats are not the way. I truly hope the world will come to realise our struggle sooner rather than later, and that we all get the research in to our illness to help us escape the daily battle. The stigma, and mistreatment of M.E patients needs to stop, and the media needs to get their act together and help us, not hinder our cause by taking us ten steps back for every one step forward.
Sarah x
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