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Posted May 10 2010 12:00am
If you are reading this the chances are you have CFS/ME or Fibromyalgia, you think you have, you know someone who has, or you've just been diagnosed. In other words, you have an interest which has brought you to reading about the condition.

When I was healthy and functioning, if I had spare time for the Internet I was probably looking for shopping, holidays, the news, horoscopes and keeping an eye on the job market. I certainly wasn't looking for articles about Myalgic Encephelomyelitis and if I had found one it wouldn't have engaged my interest at all. I worried about getting cancer, but not very much. I was obsessed about my weight (still am). And if I thought about serious illness or disability it was always going to happen to someone else.

I thought I knew about M.E., it was that viral thing that means you can't get out of bed and, poor things, it is very misunderstood and they make you exercise but exercise makes it worse. That was the sum total of my knowledge.

So, when my health started to deteriorate I wasn't thinking about M.E. at all. I had muscle pain and fatigue, and proveable osteoarthritis. There were good and bad patches with 'flare ups'. I thought I had a kind of rheumatoid arthritis that wasn't showing up in blood tests.  A woman I was seeing for Shiatsu massage said, it's not bad enough for M.E. And I agreed. After all I was still out and about, not lying in a darkened room completely unable to move. It was another four years and three rheumatologists later before I realised I had Chronic Fatigue Syndrome with Fibromyalgia, sometimes called M.E. So, then I was reading everything I could get my hands on. There's nothing like a bit of self-interest to raise one's awareness.

Now I find myself on the other side of the divide. I'm disabled by a chronic illness that nobody really understands much and of which there is little public awareness except for the extreme cases that make headlines. Hence my own warped perception of what it meant to have M.E.

Then there's the awareness, or lack of it, within the medical professions. I've moved around the country a good deal since I was unable to work and had to try and find a different way of living. So I've had a good number of different GPs in that time. There is always the stress, with a new doctor, of wondering if he/she is a 'believer' or not. Half of them are, half of them aren't. When it's good, it's pretty good. You can expect a full understanding of what this means to you and support in managing your condition, but only within available resources. When it is bad it's not great. The most you can expect is a prescription renewal and a weak smile. The consultants aren't much better. One told me I was depressed, another didn't 'recognise' a diagnosis of Fibromyalgia when I suggested I thought I was a sufferer.

What about the hoops you have to jump through to get your benefit entitlement? I have had the good fortune to be supported by my GPs when I have applied for Disability Living Allowance. So the state gives me the extra money I need to help with mobility and other costs that come from being disabled. Even with that extra money it is a fraction of what I lived on when I was working. There are those, though, who cannot get this extra stipend and have to live on the barest minimum. And simply because they are not believed, or because the application process is too stressful and too complicated. Even asking for help with the forms can be too much if you are chronically fatigued. That's the extra benefit. For the basic sick benefit, ESA, people are routinely not believed. This is evidenced by the large number of applicants who are given the benefit on appeal, suggesting the application process is flawed.

Say you manage to survive this obstacle course and get a diagnosis and enough money to live on? Well it's pretty patchy depending on what part of the UK you are living in. Again, I got lucky and was referred to one of the few M.E. clinics so I could learn about the illness and learn to manage my energy and even see some recovery. But, even if you get it, that support doesn't continue. Either way you get parked up in the layby of life, with management tools or without.

I think a good parallel is the state of the mental health services in this country. If you are moderately depressed you are unlikely to get the support you need - other than prescription drugs - in order to help you recover. In some areas the waiting lists for counselling through the Community Mental Health teams are closed. With the impending likelihood of financial cuts that situation is likely to get worse not better. The services for those with M.E are in a more parlous state. However, if you've got cancer - ta daaaa, you are a political hot potato and get seen within two weeks. Depression and CFS can be life threatening illnesses too. The suicide rate of people with both conditions is pretty high, but because the illnesses are perceived differently by society and measured differently the resources are allocated unfairly. I think it is a bit like the Victorian's view of the deserving and undeserving poor. If you've got an illness that can be detected by existing technology such as a blood test or a scan, you are deserving of treatment. If 'they' cannot detect an organic cause for your distress you are cast into a dustbin diagnosis of depression, or CFS. In fact, very often CFS is seen as a mental illness, a manifestation of depression. That makes for a heck of a big dustbin and an awful lot of people.

We know much more about depression than we do about CFS. The latter appears to be a cluster of conditions with different causes and different scales of severity. It seems the more studies that are done the less we know about it. But how can we move forward when there is so much denial even about the existence of the illness and so much stigma attached to contracting it? I think the efforts to find a scientific test are laudable. But what if one tests negative for say, XMRV, and is still suffering? Does this mean one is lying, making it up? Yes, keep looking for a scientific cause, a test and a cure, but also let's change attitudes towards those who fall ill and make sure they get their basic needs met.

So, in the unlikely event you are healthy and reading this, those of us with CFS would like you to listen and examine your own conscience for uncomfortable prejudices. We don't want this disease, it is not nice, it is not easy. It is physical, organic and real. You can have it mildly or severely. You can walk around with it for years and not realise or it can strike you down overnight. It can and does happen to anybody. It is a fairly common illness that is sapping the life blood out of the community, destroying families and robbing us of our potential. So can you all please get your heads together and do something about it?

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