#19 Is this the most misunderstood condition in the world?

There are an estimated 17 million sufferers globally, and it affects four times as many women as men...

It was the year 1955 and something very strange was happening at the Royal Free Hospital in London. Precisely 292 members of medical and administrative staff had fallen ill within just a few months of each other. They were so poorly, with unexplained symptoms of muscle weakness, limb pain, nausea, dizziness and headaches, that the vast majority had to be admitted to the very hospital where they usually helped care for others. Nobody knew then what was going on—and, frighteningly, they still don’t for sure today.

The following year, the medical journal The Lancet first described this mysterious cluster of illness as myalgic encephalomyelitis (commonly now shortened to ME). It was one of a number of similar ‘outbreaks’—united by the fact that debilitating symptoms appeared to have no clear cause—that doctors had observed everywhere from the United States to Denmark and South Africa to Australia. The World Health Organization was prompted to give ME official recognition as a neurological disease in 1969, the year my mum turned nine years old.

That’s hysterical

Then, in 1970, something happened which would change the course of her life—and millions of others—forever. In a controversial, but influential, study published in the British Medical Journal, psychiatrists Colin McEvedy and A.W. Beard branded ME ‘mass hysteria’, since medical tests at the time showed no abnormalities or obvious causes of infection. They also, cruelly, suggested that the mostly-female sufferers at the Royal Free had been exaggerating how unwell they felt. It was all in their heads.

This interpretation of ME as a purely psychiatric illness by two men took the wind out of early research into the condition’s physical causes and gave energy to psychological treatments, with devastating consequences ever since. My mum graduated from medical school—amongst a then-predominantly male cohort—in 1984, the same year that ME was joined by a second name, chronic fatigue syndrome (or CFS). This seemed to cement in the mind of wider society that sufferers were simply a bit tired from the stresses of modern life.

Indeed, the media printed pieces about ‘yuppie flu’ with zest—suggesting, incomprehensibly, that ME/ CFS was becoming a fashionable diagnosis among young, educated high-achievers. As journalist Maya Dusenbery points out in her brilliant book Doing Harm, the 1980s were a time when increasingly empowered women started to push back on medicine’s dismissal of ‘invisible’ illnesses (which also included fibromyalgia and Lyme disease). In response, this saw patients disregarded as ‘feminist “superwomen” trying to “have it all”’.

Painful truth

I, for one, am glad to have been raised by a superwoman who has never stopped striving to live her life to the full. My mum first fell ill in 2005, when she was just 45 years old, and—while there have been many moments of hope—she has not yet fully recovered. I was only 12 at the time, and still cherish my memories of her in her pre-ME/ CFS form. A brilliant, unstoppable force with a 20-plus year career as a doctor of sexual and reproductive health, passionate about her hobbies (including horse riding) and always there for her family and friends. I told her story for a Women’s Heath magazine piece in May 2019 (an online version of which you can read in full here):

The mum I’d grown up with—the energiser who took charge and galvanised everyone around her to get shit done—became relegated to bed for hours, days, weeks on end…People failed to understand why mum could be bed-bound by early afternoon because she’d done a food shop that morning. As the muscles on her slim frame wasted away, every hug became a tangible reminder of how much had changed.

Still, to this day, I have never received so many messages about something I have written, from other sufferers who said they felt seen, heard, believed. I suspect it’s because while ME/ CFS affects 17 million people globally—including 2.5 million in the US, and 250,000 in the UK—it remains painfully misunderstood. We know anyone can be impacted, but it is most often diagnosed in those aged 25 to 45 years old and in four times as many women as men. It can also develop at any point, although it often occurs when someone comes down with a cold or the flu at a particularly demanding time in their life.

The fact that the condition has predominantly female sufferers has undoubtedly led to it not being taken as seriously. If you’re unclear about the underlying sexism running through the history of science and medicine, please read Dusenbery’s book, Gabrielle Jackson’s Pain & Prejudice and Caroline Criado Perez’s Invisible Women. This means that—almost 70 years after the outbreak at the Royal Free, in an era when AI can convince people the Pope is partial to a puffer jacket—there is no definitively known cause or certainty about who is at risk, and certainly no effective treatment or cure.

Head ache

Add to this reality the fact that, as an ME/ CFS sufferer, it can be almost impossible to articulate just how desperately serious your symptoms are. The English language can’t really relay how the fatigue you feel is far more than the tiredness of a late deadline, party or intense gym session. This is exhaustion that reverberates to the bone—that won’t necessarily fade after a night’s sleep, like an iPhone battery that never recharges above 20%. Throw into the mix symptoms like muscle weakness and joint pain, as well as cognitive issues such as forgetfulness and confusion, and sensitivity to light and sound. Still can’t comprehend? See this Twitter thread.

More disorientating still, is the fact that the severity can vary greatly. A quarter of sufferers are housebound or bedbound—possibly forced to use a wheelchair or live in the dark—while others, like Cher, can recover enough to walk the Oscar’s 2023 ‘champagne’ carpet. What’s more, symptoms can ebb and flow in intensity, so you may unknowingly walk past someone battling the condition in the street because it’s a ‘good’ day or they’re using up their precious 20% ‘battery’ to shower and get some fresh air—risking ‘paying’ the price with an energy ‘crash’ later. As Dr Luis Nacul, clinical associate professor at the London School of Hygiene & Tropical Medicine, once told me:

‘ME/ CFS is, on average, more disabling than many other major conditions, such as rheumatoid arthritis or cancer.’

Yet, ME/ CFS sufferers don’t always receive the same sympathy and support from family, friends, colleagues, acquaintances, strangers and—of course—medical professionals, as they might with another condition. Imagine having to receive help for scary, life-changing symptoms from a doctor who is ill-equipped given the lack of scientific answers and medical school training. With pretty much only an antidepressants prescription and advice on energy ‘pacing’ in their arsenal (indeed, many sufferers, underserved by mainstream medicine, have to muddle their way through alternative approaches).

That’s even if the compassion from medics is there. Maeve Boothby O'Neill, the daughter of The Times journalist Sean O’Neill—who has written extensively to raise awareness of ME/ CFS—tragically died in October 2021 at the age of just 27 from complications relating to the condition, which she had battled with for half her life. Her mum told an inquest last year that her daughter’s consultant suggested she was ‘basically making it up’. Following her death, her father tweeted:

‘Bit by bit this awful illness stole the youth, promise, independence and eventually the life of an intelligent, creative, wonderful young woman. Medicine’s understanding…is astonishingly poor; patients like Maeve are stigmatised and discriminated against.’

What’s more, in a world in which we reward those who work, contribute and thrive, the lack of worth often felt by sufferers—who frequently have to give up careers, passions and can’t be there for others because they can barely be there for themselves—is heartbreaking. It was reaching for a sense of purpose that propelled Jennifer Brea—who was a very active Harvard PhD student before ME/ CFS left her housebound from 2011—to create Unrest. I still find this moment of raw vulnerability from the award-winning 2017 documentary deeply moving:

‘It was like I had died, but was forced to watch as the world moved on. There are some days where I’m just doing a good job by holding it together and not killing myself.’

Because, while ME/ CFS is most certainly not a mental health disorder, it is understandable that if your life is upended in this way—but nobody around you believes anything is wrong—then you might feel anxious, depressed and reach a very lonely place. One study found that sufferers are six times more likely to die by suicide than those unaffected by the condition. A friend once told me about her classmate who had been diagnosed during their teens—years later I asked her how she was doing now, and I could instantly tell by her face what had happened.

Good energy

This ME/ CFS International Awareness Day 2023, I can’t help but feel that things are moving slowly but surely in the right direction. In 2016—just over a decade after the condition turned my mum’s life upside down—The Royal College of General Practitioners finally stopped classifying it as a mental health disorder, following years of tireless campaigning and new evidence. Then, in 2020, the National Institute for Health and Care Excellence announced they would be removing two controversial, debunked 'treatments' from their guidelines—graded exercise therapy and cognitive behavioural therapy.

While it’s estimated that funding for ME/ CFS research is 20 times lower compared to that of comparable diseases, recent studies are making headway in shedding light on what could be the cause—for example, suggesting that there are physiological differences in the immune systems of sufferers. There is also hope that research into long Covid, the similarities of which I wrote about in this Women’s Health piece, will also bring greater understanding.

Do you have ME/ CFS? You are invited to take part in the world’s largest genetic study of the disease. Led by researchers at the University of Edinburgh, it aims to identify differences in a person’s DNA that can increase their risk of the condition, and build a greater understanding of the underlying mechanisms. Get in touch with them here.

I feel guilty every time I write about this topic. Not because I think it isn’t deserving—in fact, the more people for whom the curtains can be thrown open about ME/ CFS’s injustices the better—but because I can go to bed, wiped out, knowing that I will wake up feeling refreshed. That I can say to friends, I’ll get back to you as soon as I have some brain power, meaning in days and not years. That I can push my body through squat jumps in my PT sessions knowing that my limbs won’t give way. That physical and mental rest is an act of self-care that’s an option, rather than a necessity. That I can keep writing for my job, without struggling to find the words in my head. Although sometimes there quite simply are no words.

My beautiful mum, during a time of ‘good days’, and my amazing dad in one of my favourite cities.

Have thoughts? Tell me in the comments below. Otherwise, thank you for reading—until next week!

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