August 12 2016

What is CFS?

Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. There’s some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

Says the NHS. I’ll take the word for ‘improving over time’, unaided I’ve only seemed to deteriorate. There are treatments for CFS, but no cures.

Research into this illness is sparse, as is funding. However, recent research suggests CFS may be an auto-immune disorder, which would be why they had some success with the drug Rituximab in Norway. Rituximab is normally used for leukemia and rheumatoid arthritis, among others. It kills off specific white blood cells, so your body has to remake them. It’s a nasty thing, with many side effects.

How did I get diagnosed with CFS?

My illness started when I was younger. Fifteen or sixteen. I was so tired, had trouble falling asleep but even after sleeping for 12 hours, I wouldn’t feel better. I missed school a lot. I went to see the family GP. Bloodwork was done, but no cause found. Not mono, not a thyroid problem, no deficiencies.

A year later I went back. Same result. And another year later. I finally received a diagnosis. It’s ‘chronic fatigue’, a diagnosis made through exclusion and the advice was this: Eat healthily, try to keep a normal day and night cycle, exercise. Doc said it should be gone in ten years.

I did. I got a part time job at the HEMA, went to school when I could drag myself out of bed, went horseriding for an hour or two once a week. I started feeling ill once a month or so. Like I had the flu. Assuming it was the flu, I blamed my sudden increase in contact with people, figuring I just had a weak immune system or something. I went right on with having a normal life.

Then I kept missing more school, but I was paid for the work so I prioritised that. I got ill more often. I started missing more of both, until, 2 and a half years after starting at the HEMA, I quit. I focused all my energy on school, but it never helped. I hopped from IT to Graphic Design and back to IT as my various mentors thought my absence was a motivational issue. I saw social workers and they suggested it was all a self-esteem issue. If I said I was depressed, they’d take my exhaustion slightly more serious. Never enough to offer a solution other than ‘keep trying‘, though. My mentioning of my diagnosis only resulted in blank looks or exasperated sighs. ‘Everyone is tired sometimes’ is a reply I’ve heard more than once.

I did not know anything about my illness other than that I was tired.

Looking back, I now know the frequent flu was a symptom. It’s called Post Exertional Malaise. I learned my clumsiness and absent-mindedness are common symptoms. The muscle stiffness, sweaty palms yet being cold all the time. Everything I never stopped to think about, they’re all symptoms.

Putting two and two together – I went back to the GP and had them refer me to a special CFS/ME clinic in Amsterdam. They diagnosed me with Chronic Fatigue Syndrome, though I also fit the bill for Myalgic Encephalomyelitis and the new American definition called Systemic Exertion Intolerance Disease. To fix some symptoms, I now wear thigh-high compression stockings and take l-carnitine & acteyl-l-carnitine tablets twice each day. I also supplement vitamin D3, as I really don’t get out much.

What about today?

Today, aabout a year after my official diagnosis, I’m doing better than I thought possible. A few years ago I was mostly housebound, only leaving the house once or twice a month. Now, I’ve finished my appointments with my physiotherapist. He suggested I join a gym to keep up improving. The light exercise helped lower my resting heartrate some, especially on rest days. I can do more than I’ve been able to do in years – I actually helped carry boxes and assemble furniture when we moved! I’m quite hopeful that improving my muscle efficiency will improve my day to day life. Exercise, however light it may be, also gave me a mental boost. I achieve real, physical things now – which feels great! I did not realise how much I missed being capable of exercise, how much I missed horseriding. But now that I’m working on improving myself, I’m trying to use that feeling as motivation.

Life still feels like a juggling act – but at least I no longer have my hands tied behind my back.