Yes, People Die From ME/CFS

gravestones, some crumbled, with out of focus trees in the background

Content warning: I talk in this post about suicide and assisted dying.

The first recorded death from ME/CFS in the UK was that of Sophia Mirza in 2005. Not that long ago, you will notice, and she suffered some pretty bad abuse from the medical profession before it happened. Recently, another family have spoken out about their experiences of a family member dying from the illness.

ME/CFS kills people. It could kill me. A lot of people have been identified as having died from it, even when that isn’t what’s on their death certificate. There are memorial lists for these people around the internet, including:

The National CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) Foundation

The Hummingbird Foundation

ME/CFS Memorial Page on Facebook

There aren’t many studies on the subject of fatalities from ME/CFS, and most of those that do exist are deeply flawed. This means there aren’t really any reliable statistics about the vulnerability of people with ME/CFS to death. It does seem, however, that people with ME/CFS die, on average, at a younger age than people in the general population do. This will not come as a surprise to many people who have the illness or who are close to a person with it.

ME/CFS affects everything in your body. It all becomes less efficient: your heart, your immune system, your respiratory system, your nervous system, your digestive system. Organs falter and sometimes fail. Previous conditions become worse because your body no longer has the resources to fight them. Your immune system, as well as letting you get every illness going, goes into overdrive in other ways, giving you a whole slew of allergies and intolerances. You become less able to absorb nutrients. Your joints hurt and your muscles ache. This is nothing like an exhaustive list, but perhaps it gives you an idea. So it’s hardly surprising that people with ME/CFS are more likely to die young.

The fact that many medical professionals still choose to believe, in the face of the constantly growing evidence to the contrary, that ME/CFS is a psychiatric disorder doesn’t help. It means that patients don’t get the appropriate help. There have even been cases (including Sophia Mirza’s) of patients with ME/CFS being forcibly sectioned in psychiatric wards, where the treatment they receive is not only inappropriate for their condition, but actively harmful.

Even people who are correctly diagnosed and referred to an appropriate service are often given inappropriate “help”. When, a year ago, I went to a workshop provided by the service I use, I spoke to a young woman who had been under the “care” of a clinic in London which still forced its patients to take part in Graded Exercise Therapy, even though the effectiveness of this for ME/CFS has been categorically disproven (as has CBT as a therapy for ME/CFS). Not only that, but the clinic was at the top of a hill and not accessible by public transport. I think you’ll all see the irony there. In theory, of course, a patient can refuse to participate in the treatment a clinic offers, but the danger with that is that if the DWP gets hold of the fact they you’ve refused treatment they are liable to stop your benefits on that basis and frankly, it’s hard enough for people with ME/CFS to get benefits in the first place.

Of course, the physical effects of ME/CFS aren’t the only reason that people with the illness die. A Lancet article, while flawed, identified a greater risk of suicide in ME/CFS patients than in the general population. Again, this will not come as a great surprise to anybody who knows what it’s like. It is so debilitating, and has such a huge negative effect on a person’s life, that it’s utterly unsurprising that people kill themselves rather than live any longer with it.

ME/CFS has itself been described as a “living death”, especially for those who have it severely, who can’t leave their beds, feed themselves, or talk to people. Even I sometimes feel as though I’m existing rather than living. People are fond of talking about how various illnesses should be “about what you can do, not what you can’t do”, but this one is all about not doing things; stopping doing things; finding apparently easy things impossible. People with ME/CFS and not depression don’t die by suicide because it is a psychiatric illness. They die by suicide because it is an unbearable illness.

Just a few months ago, a Swedish woman called Anne Örtegren chose to end her life at a clinic in Switzerland, and she wrote a clear, concise article explaining why. She identifies three main factors: her unbearable suffering, the lack of a realistic way out of the illness, and the lack of any safety net. It’s hard to argue against the reasonableness of this action, and many, many other patients have felt the same way and taken a similar way out.

It’s a possibility I constantly keep in mind for myself. It still isn’t impossible that I’ll recover, but neither is it impossible that I’ll keep on getting worse, or that I’ll catch some illness that will precipitate a sudden further decline that I won’t be able to recover from. Suicide is certainly on the cards, though it’s not an action I’ll take without a lot of thought and consideration. I won’t be ashamed or embarrassed by this, either. I’ve lived most of my adult life with depression; I worked incredibly hard to free myself of one of the biggest factors that contributed to do it, but by the time I succeeded at that, I was already sinking into ME/CFS. I refuse to live a death; I would prefer to die. There are those who think this is selfish; I believe that it’s equally selfish to expect someone to live a long and miserable life.

Many medical professionals who do believe in ME/CFS as a physical illness don’t believe that you can die from it. This is patently nonsense. People can die from it. People do die from it.

(Photo by Wendy Scofield on Unsplash.)

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