Chronic fatigue syndrome (also known as myalgic encephalomyelitis, ME) is a debilitating neurologic illness that affects up to one per cent of the population. It can affect anyone of any age, even children, but is most common in adult women. Besides fatigue the symptoms can include eg. cognitive dysfunction, sleep disorders, chronic pain, muscle weakness, orthostatic hypotension (problems with maintaining an adequate blood pressure), headaches, hair loss, heart damage, increased suspectibility to infections, stomach problems, bladder problems and epileptic seizures. Some patients are entirely bedbound and unable to even eat. A small minority die of the complications. A distinctive feature of CFS is post-exertional malaise. Recovering from simple exertion can take days, weeks or even months.

The cause of CFS isn't known, but infections and genetic suspectibility are known to play a role in at least a part of the cases. I could tell you about dysfunctional NK cells, autoantibodies, inflammatory cytokines, mitochondrial dysfunction and other things, but that would be boring and complex, and it's not the point. The point is that there is a serious, disabling illness that affects millions of people, much more people than eg. multiple sclerosis and more people than AIDS in most Western countries, yet it is all but ignored. Research money is scarce (a joke compared to any other similar illness), the patients are treated with contempt, they are denied sick leaves and disability, and often they don't get any treatment. No one's running for us, not many people are wearing our blue ribbon. Many still believe that CFS is a psychiatric or psychosomatic illness despite thousands of studies proving otherwise.

CFS is a hell which isn't limited to the illness, but the social side as well. It's hard to believe how bad it can be if you haven't been there yourself. It's not an experience I would wish on anyone. I've been too sick to eat, too sick to walk and people have told me I'm just lazy and hypochondriac and laughed at me. All my sick leaves have been turned down despite extensive medical documentation and I haven't got a penny of the money I'm legally entitled to. My chances of getting on disability seem slim. Luckily after six years of anguish I have been able to find a doctor who is willing to treat me based on my own suggestions and I've had some success so far. But most people aren't that lucky.

I have two friends with CFS who are about my age (20-25) and have been sick for well over a decade now. One of them is in wheelchair and her sight is severely impaired. The doctors couldn't care less about treating her, even though dozens of treatments for CFS exist. The other person lives in a family of two other persons disabled by CFS. I knew a middle-aged woman who had CFS. She committed suicide in 2004 after living with severe pain for years. She said she loved life, but hated the way her life had turned out. I dedicated my book about CFS treatments to her. This is the all too common story of CFS. There are young people who have spent over 10 years lying flat in their bed. They can't read, they can't watch TV, they can't talk, sometimes they can't even tolerate any light or noise. One of the people Jack Kevorkian helped to die had CFS.

So what can we do? What can you do? The least you can do is to educate yourself even a bit. You most likely know several people who are sick with CFS. Chances are that most of them don't have a diagnosis and they're not only sick and tired of being sick and tired, but also sick and tired of not knowing what they suffer from and sick and tired of being ridiculed by doctors and people close to them. If you think someone you know might have CFS, you can tell them about the illness. And never let doctors tell them that the problem is "all in their head" or that there is treatment. You can tell them there are many good treatments, such as Ampligen and LDN. You can help them with things like household chores, and of course offer them your unconditional support. Compassion, understanding and education make the world a better place. By favoriting this article you can create more exposure for this cause.

I was hoping to close off with a feature of art related to CFS, but unfortunately there's very little of it to be found with DA's search engine. So, in closing, here are links to two interviews I've made with people who have CFS. If you're against this "self-promotion", don't click them.