Remember the 1980s, when the word yuppie came into vogue, disparaging young, upwardly mobile professionals? These were the expensively-dressed types who worked in the City of London in high-pressured jobs that demanded 14-hour days and weekend shifts.

There was more than a hint of jealousy behind this belittling description, people’s resentment of such high-fliers fuelled by their wealth and status. So, when hundreds of overworked young professionals began to complain of a new ailment, whose symptoms included exhaustion, achiness and brain fog, it was a short step to calling it Yuppie Flu: in other words, brought upon themselves by burning the candle at both ends. Newsweek, which coined the term, described it as “a fashionable form of hypochondria”.

Even now, that put-down enrages me. This was the attitude that encouraged everyone – the medical profession included – to categorise what became known as chronic fatigue syndrome or ME (myalgic encephalomyelitis) as self-inflicted and/or imaginary. When sufferers failed to make a swift recovery, it was assumed their problem was more psychological than physical. “Pull yourself together” was the kindest of the helpful comments directed towards those it felled.

Read more 

And I do mean felled. As someone who came down with ME in the early 1990s, I can tell you that, when it was at its worst, getting out of bed was difficult: not just because of feeling weak, tired and unable to think straight, but because moving hurt, sometimes so severely that walking to the bus stop felt like a trek to the North Pole.

Yet I was lucky. Although ME blighted my thirties, and I still have occasional relapses, my case was mild compared with many. A friend had it so acutely that one evening he burst into tears because he did not have the strength to cut open a baked potato. That might sound comical, but for him it was petrifying. Thirty years on, and working full-time, he still has frequent spells of feverishness and fatigue and has to take to his bed.

I know of others who spent months under the duvet, with the curtains drawn against the light. In a 2019 parliamentary debate on appropriate ME treatment, Labour MP Mohammad Yasin criticised the government and the health service for not fully recognising the illness. A number of his constituents suffered from ME, he said, “and at least two have been bedridden for 30 years because of their condition, and their story is not uncommon”.

Imagine spending three decades in bed, unable leave the house. Unthinkable. But whereas many illnesses elicit sympathy, chronic fatigue syndrome is a hidden malaise, whose impact often goes unseen.

One friend became so poorly that she and her husband could not start a family, as they had always intended. The effect was irreversible and lifelong. It is miserable to think that thousands of lives have been ravaged by ME, the plight of sufferers going unacknowledged and unaddressed. Indeed, when it comes to medical textbooks and government funding priorities, it’s almost as if it did not exist.

Chronic fatigue syndrome is realChronic fatigue syndrome is real (Image: free) That fact was highlighted in the starkest possible way with the tragic death in Exeter in 2021 of 27-year-old Maeve Boothby O’Neill, who died from malnutrition caused by severe ME. Boothby O’Neill, who came down with ME aged 13, eventually became so unwell that she was unable to eat, drink or speak.

What she and her family went through is unimaginable. And yet it must be imagined if further deaths are to be averted. Although ME is fatal only in rare cases, the damage it causes, and the devastation it leaves in its wake – careers and relationships ruined, incomes lost, sufferers reduced to lifelong invalids – is shocking. As is the fact that nobody in power seems to care.

At the inquest into Boothby O’Neill’s death in August, the coroner Deborah Archer heard that some medical professionals did not believe ME was ‘real’ and that this delayed the provision of palliative care.

Earlier this week, Archer published a prevention of future deaths report, which unflinchingly highlighted the lack of care for those with ME: no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe ME. She found that there is no funding at present for research into the disease, or for its treatment, and noted that training for doctors on the illness is “extremely limited”. In light of this, she is calling on the health secretary Wes Streeting and the NHS to take urgent action to prevent future deaths.

Whether they will listen remains moot. So far, Boothby O’Neill’s death has done nothing to prompt awareness within the NHS that ME can be life-changing and life-threatening. It is estimated that there are 17-24 million sufferers worldwide, and roughly 250,000 in the UK, including children. That last figure is only approximate, however, and does not take into account suspected under-diagnosis in ethnic minority groups, or those with long Covid whose symptoms might reach the threshold of ME.

Read more Rosemary

Nevertheless, despite the number in Britain living with the condition, in many circles they are still seen as malingerers. It’s as if their symptoms indicate a personal failing rather than a malfunction of their immune system. Does the fact that ME affects three times as many women as men help explain this? Are we still in the territory of Victorian medical prejudice against those with wombs, whose illnesses are simply a manifestation of hysteria?

Recently, when I told a GP that I was feeling too tired and unwell to go for a walk or get to the gym, she asked if this might be because I wasn’t exercising. There it was again: the idea that the patient is at fault, and symptoms will improve if you can act as if you’re feeling fine.

The emergence of long Covid, some of whose symptoms bear a similarity with ME, has led to greater appreciation of the virulence of post-viral maladies, and removed some of the assumption that it’s all in the mind.

Is it too much to hope that the misery caused by long Covid could inspire a wholesale reappraisal of ME, to explore its origins and treatment? One of the most dismal lines in all the literature about this condition is the oft-repeated fact that “there is no known cause or cure”.

How many more decades must pass, and how many more lives be shattered, before this changes?