Hear us

One of the key problems for sufferers of Myalgic Encephalomyelitis is that we are ignored. Our illness works against our ability to be seen and heard. ME is a difficult enough condition to try to explain to people, but trying to do it whilst exhausted and confused makes the task near impossible. Making public displays and being seen and heard in the community requires energy and many sufferers are unable to tolerate the noise and  brightness that would be required to do something as simple as be present at a demonstration.

There was a time when I thought that all we needed was to have someone famous develop ME. Not that I’d wish it on anyone, but it seems that once a celebrity develops an illness the media are all over it. I realised after a while that it wouldn’t matter. There have been several celebrities diagnosed with ME including one of my idols, Michael Crawford. There’s plenty of interest in stories about these people but how good a story can you really make about someone lying in a dark room, without the energy to talk to you? We can’t fight our own battle, and the medical and governmental personnel that decided years ago to back the wrong treatment can shout louder and be seen. All we can do is rely on others to fight our battle for us. The people who have lived with the illness and managed to recover, the people who have cared or are still caring for severely afflicted ME sufferers or the few medical professionals that continue to fight for a cure.

Recently an hour long documentary film was produced in the UK by Natalie Boulton and Josh Biggs  – the mother and brother of a severe ME sufferer. It has been assisted by many people giving their time and skills voluntarily to help us be heard.

You can find their official site here. Please help us be heard.

 

People with ME/CFS don’t have a sense of humour

Today I saw yet another media article about ME/CFS and whether the condition was real.  There is nothing unusual about this, each week another handful of these are written.  The thing that made me write today’s post however, was a comment response to the article that said that people with ME/CFS don’t have a sense of humour.

He is entirely correct.  Where our health is concerned, ME/CFS sufferers do not have a sense of humour.  There is a very good reason for this.  Every week since my diagnosis I have watched new articles released in newspapers, magazines, blogs or on television all looking at ME sufferers and how convenient it is that none of their illness can be proved.  Occasionally a positive article will slip through the net describing realistically what it is like to struggle through each day with such a debilitating illness, or that gives a positive reinforcement to the neurological/physical aspect of the illness.  These positive articles are extremely rare, however, and the media as a whole seems to continually spawn articles that confirm in the eyes of the general public that people with ME/CFS are lazy, lying hypochondriacs or are in some way mentally impaired and requiring psychiatric treatment.

For a physical, neurological illness.

There does appear to be a distinct lack of articles telling the sufferers of other severe debilitating physical illnesses (like cancer for example) that they can be cured with a little psychiatric treatment, or advice articles telling people with AIDS that its all in their head and a little bit of exercise and self-esteem would make it all better.

Of course there aren’t articles telling the world that sufferers of Multiple Sclerosis just need a bit more fresh air and exercise and to stop being lazy.  That would be considered rude, politically incorrect and insensitive.  Yet ME/CFS sufferers have no such considerations as many of these articles or documentaries are backed by medical professionals.  If only we could cure all the cancer victims in the world by telling them they aren’t really sick.  We can’t.  Just as we can’t cure the ME/CFS sufferers by doing the same.  It is socially acceptable to continually belittle and demean the sufferers of this misunderstood illness which has already taken much of their life away.  How dare they not see the funny side?

I don’t have a sense of humour about ME/CFS, just as I wouldn’t find jokes about AIDS funny, especially if I were HIV+. Surely that is a natural reaction?

 

 

Why are people threatening the lives of scientists?

In the past week, there have been several news stories about medical science professionals receiving death threats, and having people show up to their lectures carrying weapons.  For more information on this, please feel free to check out the article written by Robin McKie for The Observer, or this one by Max Pemberton for The Telegraph.  The second one is particularly amusing for its presentation of unsupported theories as fact and for its disregard of the medical opinions of hundreds of medical professionals/researchers and the World Health Organisation in favour of the opinion of a very small group of psychiatrists whose theories have not been proven.

Part of me died when I read those articles.  Don’t get me wrong, I don’t condone this sort of behaviour, but the actions that people like Simon Wessely are taking are worse.  There are legal systems in place to punish someone taking a knife into a lecture theatre in order to threaten the speaker.  There is nothing to help the many people that are struggling daily to exist with M.E and yet are being removed from the care of their families if they try to refuse treatment that is causing their condition to worsen to life-threatening levels.  How can this be legal?  These laws were put in place to help people that were being denied the treatment they needed.  They are being abused in ways that to my opinion are equivalent to severe torture.  I struggle each day to get through many tasks which most people would consider basic needs, and for me this is painful and difficult.  But I am by no means one of the worst cases.  I have days where I can walk for myself (albeit rather slowly and needing support) and I am only occasionally unable to leave my bed.  There are many that never see the outside of their room.  How can it be right to be forcing these people into treatments involving physical activity that will reduce their quality of life, small as it may be, into nothing. I can only imagine that these “activists” are seeing this as the last possible way to carry a message across that may save the life of people they love.  I do not agree with the actions, but I can certainly understand why this may seem to be the only solution.

Science is about understanding the world around us and finding out truths.  It is not about creating a theory and then adjusting the world to fit into it.

This is the news report that should have been in the media.

Taken from GetwellfromME.com by Giles Meehan.