Misdiagnosed with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Misdiagnosed with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

I’m me – but not ME

If you could affix only one word or phrase to yourself, a label that tells the world your identity, and colors how they see you, what would it be?

I’d probably go with “writer/story enthusiast.” It is by no means the whole tale, but it’s the identity that weaves the most threads together, from my taste in music through to my past life as a scientist (which is as much about writing as experimenting).

However, for many years I had another label coloring my life – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome patient (ME/CFS). And that caused a whole boatload of awkwardness, socially and medically.

Myalgic encephalomyelitis (or ME) was first named in the 1950s to describe a condition characterized by extreme fatigue, muscle pain and weakness, and neurological symptoms, often triggered by an outbreak of infectious disease. The condition had been recognized before but was usually attributed to neurasthenia or nervous dysfunction in young women. The designation of myalgic encephalomyelitis, after an outbreak among staff at the Royal Free Hospital, was progress as it focused on the illness rather than the identity or mental health of the patient.

In the late 1980s, medics proposed Chronic Fatigue Syndrome as an alternative name, arguing that there was no pathological evidence for the inflammation of the central nervous system suggested by the word “encephalomyelitis.” However, Chronic Fatigue Syndrome was unpopular in turn, being associated with a psychosocial model of the condition that claimed symptoms arose from patients’ belief in an ongoing illness. Around the same time, publicly the condition also picked up the tag of “Yuppie Flu” – an insulting suggestion that it was a fake illness fabricated by those without enough other problems in their lives.

Or to put it another way, a diagnosis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome comes with baggage, much of it carried in other people’s heads.

I’m not a yuppie – and I don’t have flu.

Yuppie flu should have been given the boot years ago – not only is it derogatory, but it doesn’t have even a nodding relationship with reality. Myalgic Encephalomyelitis doesn’t and never has discriminated between economic conditions, or how much shit you have going on in your life. It’s not burnout, and whatever certain journalists may think, it’s not “a fashionable form of hypochondria”. However, although most articles about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome now treat it as a genuine illness, journalists and subeditors still love “Yuppie flu” as click-bait in headlines or links. It reinforces a tired and harmful stereotype about Myalgic Encephalomyelitis – that it is not a “real” illness, that people with the diagnosis choose to be ill.

That makes revealing your diagnosis an awkward – and uncomfortable – experience. As with any condition with public preconceptions or stigma attached, every reveal has the quality of roulette. Will this person understand? Will they be sympathetic? Will they assume I’m faking? Or on the flip-side, will they think that I can’t have “real Myalgic Encephalomyelitis” because of what I can do? Do they have a checklist of symptoms they expect me to conform to?

Read more: Stop the toxic positivity: please accept that my body isn’t getting better

In 2010, during a phase of good health, I went on a sports course. I told the company in advance that I had ME, and that this would limit my physical capacity. I explicitly asked if they were all right with that. Then during one of the maneuvers, the instructor shouted at me to push something. I tried but was too weak to do it. After a slightly frantic interval, the following ensued…

Instructor: “Why didn’t you push harder, you needed to push harder.”

Me: “I couldn’t, I’m not strong enough.”

Instructor: “Rubbish, people your size do that all the time.”

Me: “Yes, but my muscles don’t have normal strength, it’s medical.”

Instructor: “Why didn’t you tell me?”

Me: “I did! Before I booked, I told you I have Myalgic Encephalomyelitis and it causes physical weakness that limits what I can do. You said you were fine with it.”

Instructor: “Yes, but I thought Myalgic Encephalomyelitis was just a mental thing.”

Labels… even when you explicitly explain what they mean, people’s preconceptions have the upper hand.

Checked baggage? Two suitcases and 10 kg of medical assumptions.

I first got ill in 1990 when I developed glandular fever and never got better. That’s a classic onset pattern for Myalgic Encephalomyelitis, so after a few years, it became the official diagnosis – given by a pediatric consultant who believed in the immunological model of Myalgic Encephalomyelitis.

A couple of years later I was switched to a diagnosis of Chronic Fatigue Syndrome – issued by a clinical psychologist who was committed to the “illness beliefs” psychosocial model. That was my first encounter with the medical baggage of labels, but not my last. Across a number of doctors and consultants, my medical history remained the same, but my diagnosis and treatment plan depended on the beliefs medics held about the label on my file.

That sort of approach is awkward and distressing enough if you actually have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. It gets really damn annoying when it turns out that you probably don’t.

ME/CFS misdiagnosis? It’s all about the label

In 2014, a full 24.5 years after I first got seriously ill, I was diagnosed with the hyper-mobility variant of Ehlers-Danlos Syndrome (EDS). Rediagnosis happened when I emigrated to Australia and encountered doctors sharing one major characteristic – they believed Myalgic Encephalomyelitis was too poorly researched to stand as a long-term diagnosis without reassessment. From there it was a short hop, via a neurologist who spotted my stretchmarks and wonky joints, to a rheumatologist specializing in Ehlers-Danlos Syndrome. He promptly announced I was a classic case on both symptoms and history and spent much of the consult wondering how the hell my UK doctors had missed it.

I don’t know the answer to that, but I’m certainly not the only person to have trodden this particular pathway. I suspect it comes down to two things – poor knowledge of Ehlers-Danlos Syndrome, and a tendency not to reassess a condition once a diagnosis – a label – is in place. None of these medics were bad people – they all had good intentions – but unfortunately, Myalgic Encephalomyelitis was the label upfront and center on my file, and it looks like that label, and practitioners’ beliefs around it, outweighed the reality.