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The Hard Reality of Living with Chronic Fatigue Syndrome

Sufferers aren't just "being tired all the time"—their brains can't connect properly to the spinal nerve tracts and so fail to control vital bodily functions. It's time we started taking it seriously.

by Rose Lewenstein
Jun 3 2015, 5:55pm

An anatomical drawing of neural pathways. Image via Flickr user Double-M

This article originally appeared on VICE UK.

I can't remember how old I was when I realized my mom had ME, a.k.a. myalgic encephalomyelitis, a.k.a. chronic fatigue syndrome. She was diagnosed when I was two, so I can't compare the before and after. As a child, I didn't really think about the fact that my brother and I were often looked after by child minders. Or the fact that she didn't go out to work and spent a lot of time in bed. She managed, somehow, to make everything seem normal. When I was a teenager she would take me shopping like the other moms did, but an afternoon spent in a brightly lit shopping center might then mean days spent lying in a darkened room.

When I tell people that my mom has ME I'm usually met with a blank look or the question: "Does that mean she's tired all the time?" There's often an uncomfortable silence, like I'm making it up, or, for the best part of 30 years, my mom has been imagining an illness that doesn't exist. I suppose I can't blame people for their skepticism when the tiny amount of media attention ME receives is clouded with "yuppie flu" headlines and stock photos of people looking a bit jet-lagged.

Truth is, ME is not a straightforward illness. Because it's an immune disorder, it can literally affect any and every part of the body, and symptoms vary and fluctuate from person to person. It doesn't help that the name keeps changing, either. Myalgic encephalomyelitis is sometimes called chronic fatigue syndrome (CFS), which is confusing because CFS was already associated with post-viral fatigue syndrome (PVFS), and is now also referred to as systematic exertion intolerance disease (SEID). The ME I'm talking about—the one that's been recognized by the World Heath Organization since 1969—is characterized by a dysfunctional central nervous system.

Basically, the brain can't connect properly to the spinal nerve tracts and so fails to control vital bodily functions.

"It feels like a full-time job trying to monitor myself, my energy levels; deciding what I'm able to do and what will make me feel awful afterwards," says an online friend of my mom's. "Talking and being in people's company is very quickly draining, and I end up feeling shaky and weak. My jaw quite often goes into spasm. My brain struggles to think fast enough to respond to people in real time."

Like many diseases, ME covers a spectrum, and there are three categories: mild, moderate, and severe. At her worst, my mom is somewhere towards the shitty end of moderate, but generally she's somewhere in the middle, meaning she is mostly mobile and not completely housebound, but her symptoms are still very disabling.

The "tired all the time" label is misleading. "Tired," for me, is when I've stayed up three nights in a row and can't feel my face anymore. I sleep all day and then life is OK again. Fatigue is nothing like tiredness. Neither are aching muscles, migraines, pins and needles, dizziness, orthostatic intolerance, hypersensitivity to light and sound, or the many other symptoms experienced by people who have ME. It can also trigger a whole host of other complications, the most common being postural tachycardia syndrome (PoTS), which causes an abnormally high heart rate when standing up and leaves some sufferers unable to even sit in an upright position. Absolute misery, essentially.

I tried to speak to one woman who suffers from a severe form of ME, but it was impossible for her to hold a conversation. Through a series of broken text messages and some background from one of her friends, I managed to get a sense of her day-to-day life. Her illness has gotten progressively worse since the age of seven. Now in her 30s, she is permanently bedridden, with such intense pain and sensory sensitivity that even the slightest amount of physical movement or cognitive activity will worsen her symptoms. She hasn't left her bedroom for three years and can't remember when she last left the house, other than by ambulance. She hasn't washed her hair since December 1 because the limited care available means she needs to rotate which areas of her body are washed on each visit.

When I hear her story it sounds like a living hell. That isn't living—it's existing. But perhaps even worse than her illness are people's attitudes towards it. Not only is she left with inadequate support, she's also made to feel as though she could be doing something to help herself. Like what, exactly? The NICE guidelines state that the physical symptoms of ME can be as disabling as multiple sclerosis, rheumatoid arthritis, and congestive heart failure, so why is it shrouded in such disbelief? I mean, why would up to 0.4 percent of the population pretend or imagine to have such a stigmatized illness? Even the fucking Daily Mail printed the headline, "Proof at last that 'yuppie flu' is a real illness" (complete with stock photo of attractive woman holding mug against temple).

Negative attitudes are hard to shake, even in the face of science. For some reason, a lot of people find it easier to pretend ME doesn't exist, just like creationists find it easier to imagine that God made the world in seven days. Sue, 49, has struggled to maintain relationships since being diagnosed with ME 13 years ago. "Most of my family don't understand how sick I am," she says. "If I try to be positive and upbeat and not talk about my illness, they think I'm either not sick or exaggerating my illness. If I try to be open and honest, they think I am focusing too much on my illness and therefore making myself sick. I can't win. This illness has really destroyed some of the most important relationships in my life."

ME receives far less in research funding than other illnesses, which is why both its agent and cure remain such a mystery.

Unlike AIDS, which is brought on by the HIV virus, the agent of ME is yet to be discovered, but the fact remains that both diseases involve malfunctioning immune systems. Dr. Nancy Klimas, an AIDS and ME/CFS researcher and clinician, splits her clinical time between the two illnesses. "My HIV patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. My CFS patients, on the other hand, are terribly ill and unable to work or participate in or care for their families," she said in 2009. "I can tell you that if I had to choose between the two illnesses [AIDS and ME/CFS], I would rather have HIV."

So if ME is an immune disorder, I can't understand why the only recommended treatments are cognitive behavioral therapy (CBT) and graded exercise. Mental illness is, quite rightly, finally starting to see some parity with physical illness (as if the two weren't inextricably linked in the first place), but how the fuck is CBT supposed to ease the physical symptoms of ME?

As for graded exercise, which involves gradually increasing patients' level of exercise over a period of time, that's not just insulting but potentially dangerous. An Action for ME report found that of those who had tried graded exercise, almost half said it made their symptoms worse, while the Hummingbirds' Foundation for ME reported that 82 percent of severely affected patients said it made their symptoms worse.

These are shocking statistics for a therapy that's being touted as the main treatment for ME. I don't want to cry conspiracy, but seriously, in whose interest is it to promote these guidelines?

Accepting the science and admitting that ME is an organic disorder would mean our national healthcare systems are obliged to support people who have ME. The NHS budget would need to grow even more and private healthcare premiums would rise. No surprise, then, that medical insurance companies have a vested interest in classifying ME as purely psychological—even with the evidence stacked against them.

It's telling that numerous advisors to the DWP have also held consultancy roles in medical insurance companies. Meanwhile, those who aren't lucky enough to have financial support from a partner are made to feel like scroungers. Jo, 54, had her incapacity benefit removed a few years ago when she was mistakenly deemed "fit for work." It was eventually reinstated when a tribunal found the assessment was flawed, but months of stress made her symptoms even worse. "I live in constant dread of having my benefit removed again," she says. "With no partner and the fact that I'm unable to work, I rely entirely on what I get from the state. The irony is that, with a little extra coming in, I could be a much more useful member of society and maybe even help others in similar situations."

Interested in stories about mental health? Read: The VICE Guide to Mental Health and watch our short film, 'Maisie'

There are so many incidents of children and young people with ME who have wrongly been given a psychiatric diagnosis and threatened with sectioning. Dr. Nigel Speight, a pediatrician, describes an "almost sadistic element" in some cases.

One of the most tragic stories I've come across is that of Karina Hansen, a 24-year-old Danish woman with severe ME, who was forcibly removed from her home in February 2013 and held in hospital against her will. Her parents had no idea where she had been taken until they received a letter from her psychiatrist to say she'd been sectioned. It was unclear which government body gave the order to remove Karina from her home and why the parents and lawyer were not allowed to visit or see any paperwork. Their only contact with Karina was a phone call in which she said, "How can I get out of here? I can't take this," before the line was cut off. The fact that there's a Justice for Karina Hansen Facebook page proves how shocking her case is to people around the world.

Perhaps we should look to Canada, who are way ahead of Europe in their diagnostic and treatment approach to ME. The Canadian guidelines state that "compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder." Treatment guidelines say it's essential that patients do not exceed their endurance limitations or physical boundaries, as this can cause a severe, long-term relapse—a clear argument against graded exercise.

The answer seems simple: more biomedical research. ME receives far less in research funding than other illnesses, which is why both its agent and cure remain such a mystery. Maybe that's because it's not scientifically sexy. It's estimated that around 250,000 people in the UK are affected by ME, yet it's still a relatively low-profile disease. Across the pond, even Dr. Ian Lipkin, a renowned Colombia infectious disease expert, was driven to launch a video crowd-funding campaign because of lack of funding. I wonder if he'd have faced the same challenge were he researching multiple sclerosis, rheumatoid arthritis, or congestive heart failure.

A cruel irony is that most people living with ME do not have the strength to bring it to public attention. Writing this article, for example, would be a mammoth task. So while we wait for the medical profession to get their asses into gear and hope that Tory Britain doesn't cut every remaining scrap of support for the disabled, let's at least recognize ME for the very real and very shitty illness it is. Next time you hear it in conversation, don't stare blankly or ask if it's a psychological illness because you read an article about it in the Metro once. Acknowledge it and give the people who live with it some respect, because they are fighting a massive battle every day just to achieve the things the rest of us don't even think about.

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Oh, and don't tell a person with ME that they're looking really well. "Often people with ME don't look ill," says Alex, 49, who has had ME for most of her adult life and only leaves the house on a "good day." "People who are severely ill with ME are hidden away in their homes, bedridden, and out of sight and mid of their neighbors. People can't see those that are missing from their communities," she continues. "Their stories sound almost unbelievable. How could someone be that ill and not be getting treatment or help?"

Sometimes I forget that my mom has ME. That's not because it doesn't show—it's because she isn't defined by her illness. And, compared to some, she's lucky, because my dad has always been such a huge support. I can't remember her pre-ME, but she can. This excerpt from her blog gives me a picture of it:

"I do not think it likely that I will be free of ME. I spent years, money and a lot of strength looking for a cure, thinking that one day I would have my life back, hearing about people with Post Viral Fatigue Syndrome who recovered. In [the] early days I did not distinguish between that and ME. I was unable to read the signs of an increasingly malfunctioning immune system, didn't know that recovery, as I pictured it, would be unlikely. Perhaps that was just as well because I don't know how I would have stood it. I have a memory of cycling along a country road in Germany with my baby daughter in a basket at the front and holding her hand out to feel the wind rush past. There's another of us in the sea in Hove, me with my small son in my arms, waist-deep, jumping the waves. I already had ME at that point but was able on occasions to override it, something which would (I learned over and again) lead to worsening symptoms. Neither children will remember those occasions because they were too young, but those moments are written into me—precious because they were the last moments of their kind. I had to move, as it were, to another country, the land of a particular kind of chronic illness—to learn its ways and find my way around."

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