Hello.
So I started this blog mainly to just keep my hobby of writing going a little better, in much the same way as my former colleague Chris does at his excellent film review site Chris Vs Cinema. (edit: link corrected!) Far be it for me to move away from that whole objective, but in the last two weeks, I’ve found myself getting more angry about the way certain parts of the media perceive the condition I and many others find themselves forced to deal with on a daily basis.
Most of you reading this will probably know what I’m talking about. I have a chronic health issue called ME, or to give it it’s now more accepted medical name, CFS, Chronic Fatigue Syndrome. There is no known cause, and no known cure, and it affects about 200,000 people in the UK. In some cases, it can lead to people being confined to their houses or worse, to their beds. It ruins their careers or schoolwork, relationships and friendships, and it can sometimes last for many years. Contrary to the name, whilst fatigue is a major symptom, it’s not the only symptom – it affects a whole lot more. Personally, my CFS has accounted for headaches, muscle aches, backaches, dizziness, chills, brainfog (by this, I mean, the inability to get my brain to remember things), the list goes on. And so no, it does not just mean that I’m a ‘bit tired,’ as some people believe this is all the condition is.
I’m lucky. During my later school years and ill advised attempt to get a university degree, I had days and weeks where I could do very little indeed. I had good days and bad; the good days were sometimes very good, the bad days were filled with daytime TV and feelings of feeling very sorry for myself. But the aches, pains and mental and physical fatigue meant I would be unable to go out to the shop sometimes. It’s a horrible feeling, one I can still very much remember. But I consider myself lucky because, since even my earliest times of being ill, I’ve been in contact with people – friends, mostly, these days! – who understand the condition and let me know I wasn’t alone. I consider myself lucky too that, for the most part, my condition has settled to the point where I have, almost, a normal life now. I’ve had a regular job since 2004, and with the exception of 10 weeks in 2009, I’ve been mostly OK. Not 100%, but well enough.
I know, though, how horrible this condition can be. Those same people I’m lucky to know, some of them are still struggling and fighting every day. Some are improving, some aren’t, unfortunately. I wish that wasn’t the case but we don’t have a cure, we just have to hope.
So why this? Why am I giving you a lot of background about this condition?
I’ve just had enough, frankly.
So this isn’t the best platform to vent about the injustice of ME sufferers everywhere but it’s the only one I have, and I’m going to vent this once and then I’ll stick to the reviews…
…so, on to point one.
I’ve been pointed in the direction of a facebook group which makes light of CFS, which I can pretty much ignore as 12 people are members and at least two joined up to defend sufferers of the condition. Crass though it is, it’s nothing compared to last week.
You see, last week, the Daily Mail published an article about ME/CFS which was actually not all that bad. It focused on factual information about what was previously a possible cause of the illness which would have helped an awful lot of people but now probably isn’t the case. What’s wrong with that? Nothing. Except, the same day, they then posted a poll saying “Do you believe that CFS is a genuine illness?” And 23% of people, last I checked said no. The figure isn’t really the point; this was a national newspaper asking this question.
A national newspaper questioning the diagnosis of 200,000 people as possibly not genuine. They’ve since removed the poll, blaming its publication on ‘a junior member of staff’, but why does this sort of idiocy get a national platform like this? It’s tantamount to prejudice, and it reinforces a long held belief by people, including members of the medical profession, that CFS is just ‘all in the head.’ You don’t get people asking these questions about influenza, MS, well, practically anything, really. I know it’s real, I’ve lived it. Maybe not as badly as a lot of sufferers and, as I’ve said above, I’m damned lucky. But I know it exists, I’m not looking for an excuse to not be at school or work, and to be told that on a regular basis makes me want to snap somebody’s head off! This isn’t the first time something in the Mail has angered me; normally, I can just ignore the Mail as some deluded rag.
No, the first time, they referred to ME as ‘yuppie flu’, in the headline of a story. Ah yes, that term. And this article? The article was about someone who had committed suicide because they’d been suffering for 17 years of hell with this condition, and in one idiot phrase, they basically make the whole thing sound completely trivial. It’s partly the reason this stigma is attached to us, and it tries to make us sound like we are just pretending. WE’RE NOT!
I never want to hear that phrase again, but I know I will. But onto my related, second point. The article in question related to a woman who had been bedbound for many years as a result of ME. Her name was Lynn Gilderdale, and her mother, Kay, helped her to end her suffering. I actually knew Lynn for a long time, 6 years or so I think, and although we obviously never met in person, I spoke to her online regularly. She was a wonderful person, who had a lot of time for others and tried her very best to make the best of things despite the many different problems her ME had caused. I’m not going to reveal anything more than that, as that is certainly not my place, but I feel very privileged to have known her even in the small way that I did. It’s revealing nothing to point you in the direction of the BBC website and other sites, where Lynn put herself in the public eye to try and raise awareness of the condition, you can find those yourself if you so wish. Her mum Kay cared for her throughout this time, devoting her life to caring for Lynn through all of this.
This past week, Kay went on trial for attempted murder. How the CPS can possibly deem this to be in the public interest is absolutely beyond me. The poor woman; I have just no words to describe how angry this makes me. What possessed them to reach this conclusion? It just seems completely illogical to me. People who knew Lynn know what she went through must all be thinking the same as me, right?
This isn’t justice. People stab someone on the street and that’s attempted murder. Helping your chronically, horribly unwell daughter to stop her torture is not attempted murder, and it never should be.
There, I’m done. No more shall I speak about this stuff. Just do one thing for me, please? If you ever hear any mindless idiot say stupid things like the Daily Mail, please don’t ever think they may be right. ME sucks, frankly. I wouldn’t wish it on my worst enemy, and to have people not believe me or indeed, any ME sufferer, is actually ill, is actually an insult to not only them, but Lynn’s memory as well.
Thanks for reading, if you made it this far. My next post will review the Winter Olympics official game – here’s a teaser – it’s not great.
Scott
SolidChris
January 17, 2010
I asked my wife about it. She said, and I trust her opinion a lot, no one knows. We just don’t know how or why it is there, but it is there. We don’t know what proportion is attributable to psychology or physicality but that the symptoms are very real.
Science is the ongoing search for answers and there are plenty that we don’t have. Journalism, especially the cheap and lazy reportage of a rag like the Mail, is rarely interested in a story that has no answers. You know all this, it isn’t new. Don’t get upset about it, just continue to point out the ignorance as and when you can. Calmly point out to people where they are wrong and why. You’re quite good at it.
nutshellreviews
January 17, 2010
Thanks Chris, as usual you are right. It sometimes raises my ire, even though I can usually ignore the Mail, and you and I both know that that’s not my normal state of mind. I feel better for writing this even if it came out as babbling nonsense in the end but I just needed to vent a bit. Finally; your good lady sounds like she knows her stuff, not that I’m surprised about that at all!