In Sympathy with the Beleaguered UK

A failed response to ME continues to play out in a country with a venerable legacy of ME research

Houses of Parliament, London

Copyright 2025 Hillary Johnson. All Rights Reserved.

Two and one-half years ago, in August of 2023, the UK government published its intent to deliver a plan to improve the care of ME patients and enhance doctors’ ability to diagnose the disease. Last week, the government indicated that although the highly anticipated plan would be released in March, it would not be accompanied by any money.

According to The Times, “A plan to overhaul care for patients with ME is due to be published next month, but the government revealed on Monday that it won’t be backed with extra cash for new services and research.”

No matter how much time and effort were expended in the creation of this plan, it seems now to have been an empty gesture. The news reminds me once again that the UK’s fertile era of ME research continues to be ignored and dishonored, leaving long-suffering patients in the breach once again. It also strikes me as one of those insensible, indefensible outcomes that arise repeatedly in the ME field. There is so rarely anything to cheer.

By rights, the fate of ME shouldn’t have gone this way in the UK. Beginning in the 1940s, clinician-researchers there engaged in some of the most intellectually rigorous and promising scientific avenues of inquiry. They left a solid legacy for the UK medical establishment to build on. The Scottish doctor Melvin Ramsay was a leader among this group. An infectious disease specialist working in London’s Royal Free Hospital, Ramsay was present in 1947 when three-hundred nurses and other hospital staff fell seriously ill. British doctor J. Gordon Parish identified 47 outbreaks of ME from Los Angeles (1934) to Southampton, England (1979) by careful study of the literature. Like his colleagues who studied the disease, Parish believed ME, which he characterized as a muscle and brain disorder, was infectious. Parish fell ill with ME in the 1950s and suffered from it until his death at 92 in 2017. Another in this illustrious group was E.D. Acheson, who published major articles on ME in the British Lancet and the American Journal of Medicine in 1957 and 1959.

Suffice to say, UK investigators laid out the groundwork for what might have been an estimable step toward resolution of the disease in the 1970s and 1980s. Had scientific progress in ME proceeded in traditional fashion, that cache of case studies, epidemiology and diagnostic insights might have helped to shape and foster research. Instead of building on this literature, however, the UK medical establishment changed course, radically.

Royal Free Hospital, 1955

The point of demarcation was 1970, when two British psychiatrists introduced their revisionist theory that the Royal Free hospital outbreak of 1955 had been an outbreak of hysteria among young women. Colin McEvedy and A. William Beard based their theory on the fact that ME patients were predominantly female, a belief so redolent with misogyny and distrust of women it seems almost murderous in its implications. And in truth their theory can be said to have resulted in the deaths of some untold number of women with ME since they proposed it.

What’s remarkable is the degree to which McEvedy and Beard’s treatise quickly delegitimized the existing research of the day. Reason and logic played no role, but sexism did.

Ramsay lived until 1990. He spent a significant portion of his energy seeking to rebut the two psychiatrists. Nevertheless, ever since since Beard and McEvedy put their thumbs on the scale, the UK medical establishment has committed myriad acts of barbarism against UK sufferers, both institutional and individual.

First, a quick flyover of the institutional crimes:

UK patients have been offered cognitive behavioral therapy and even graded exercise as a “cure” for their disease for decades, but these theories are built on punitive, patient-blaming ideals unsupported by facts. Error-ridden papers supporting these false cures continue to be held up to critics as legitimate. Every once in a while, someone seems to plant a stake in the heart of this literature and for a while the world seems right. Inevitably, the CBT/graded exercise theories rise from the dead to haunt patients all over again.

In the early 1990s, the UK laid plans for a series of clinics where doctors might refer people with ME. I remember reading the introductory literature provided to would-be staff in those clinics; it warned job applicants to be prepared for violence from ME patients once they were counseled that their symptoms were psychiatric in origin.

In the early 1990s, the psychiatrist Simon Wessely emerged as the ringleader of the British legions who insisted ME was—I’ll summarize—a figment of the imagination. By 2011, he had begun complaining to the BBC that he was the recipient of death threats from ME sufferers although he offered no persuasive evidence. He cast ME patients as terrorists, insisting he would feel more comfortable in war-torn Afghanistan than London where he might be confronted by members of the “ME brigade.” His whining won him an award, the John Maddox Prize for Standing up for Science.

Sometimes the abased state of the discovery process around ME is so perpetually bleak it cries out for satire. The UK has a particularly brilliant tradition in that sphere—Jonathan Swift, Evelyn Waugh, the Monty Python troupe—why has not one of their intellectual descendants emerged to take on the contemporary ME story?

The influential Wessely managed to spin his intellectually vapid ideas into a knighthood for himself. Indeed, he seemed to be the glue that both inspired and held together all the factions of the UK’s conspiracy to disappear the potentially costly disaster of ME. That conspiracy included the international disability insurance company UNUM, and the Science Media Center, which historically has defended fraudulent science about ME to the UK press. Rounding out this cabal has been the UK science establishment itself, which has been in thrall to the Wessely School’s propaganda and has shown little to no inclination to find out why the formerly obscure ME is today so widespread among the UK population.

For decades, estimates of the breadth of the ME epidemic remained unchanged. Beginning in the 1980s, I grew accustomed to reading in UK news stories that 25,000 people had ME. A 2011 study by Nacul multiplied that number by ten to become 250,000 people. In 2024, Samms and Ponting calculated a new number: 390,000.

Is the 2024 estimate correct? I don’t know, except to say that CDC insists that only one of every ten ME patients in the U.S. is properly diagnosed because most doctors don’t know how to recognize the disease.

British doctors may be similarly benighted.

In 2021, authors Hng, Geraghty, and Pheby sought to evaluate the ME I.Q. of clinicians by questionnaire. Admittedly, only 44 UK doctors filled out the questionnaire, a small sampling. For what it’s worth, according to the authors of the study, “None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 82% of participants believed ME was at least in part psychological…There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations.”

It seems unlikely that the true toll of ME in the UK or anywhere else will ever be accurately measured until work-a-day clinicians understand what it is. A simple diagnostic test would also solve the problem, but after forty years of dismissing the groundwork laid by UK investigators like Ramsay and his colleagues, it’s hardly surprising that a diagnostic test remains elusive.

I felt the chill of the UK medical establishment’s distaste for all things ME years ago when I gave a speech at the Invest in ME conference. Soon after my arrival in London, I learned that the organizers of the conference had personally invited Sir Liam Donaldson, then the chief medical officer for England, to attend the day’s scientific presentations that year. Sir Donaldson declined the invitation, even though several thousand UK patients signed a petition urging him to attend. That year, advocates in the UK reported that ME was the leading cause of school absence. They claimed thirty-three thousand children in the UK had ME. Thousands of children in England disabled by ME, I remember thinking, yet England’s chief medical officer would not sacrifice even eight hours of his time to learn something about the disease at a conference in his own city. Sir Donaldson offered no excuses or apologies, suggesting that disregard for the disease and its victims was precisely the message he wanted to send.

I’ve since reflected that the premiere government “expert” in the U.S. for more than two decades, an NIH scientist named Stephen Straus, avoided attendance at medical conferences on ME throughout his entire career, too. When I asked one of his colleagues why, he told me told Straus was afraid of the patients. Yes, I thought, but was it possible he was even more afraid of the facts?

I mentioned there have been some specific, and to me spectacular, acts of cruelty in the UK. The most outstanding have been a series of likely preventable deaths of young women, in this century, who starved to death in or out of major hospitals in London and elsewhere in Britain while doctors idled. In the 1950s, the “benign” in “benign myalgic encephalomyelitis” was meant to suggest the disease was not fatal. Anyone who has been paying attention knows by now just how lethal ME can be.

How often similar deaths may have occurred in other major European cities and in the U.S. is up for grabs, but one can assume they do occur. Allison Hunter, namesake of the Allison Hunter Memorial Foundation in Australia, died such a death in 1996. She was nineteen when she succumbed to “…seizures, paralysis, gastrointestinal paresis, severe recurrent mouth ulcers and overwhelming infection,” after having been ill for ten years.

A rhetorical question: why are young men with ME not starving to death in UK hospitals?

The most recent of these British deaths played out in public because the young woman’s father, Sean O’Neill, is a reporter for The Times of London, Britain’s most important newspaper. O’Neill has written extensively about his daughter’s ordeal for The Times.

Maeve Boothby-O’Neill died in 2021 at age 27. She had been ill since age 13. Seeking help from doctors in 21st century England left her more ill.

“Medicine and medics did not know what to do,” her father told the Guardian newspaper during an interview. “Maeve encountered treatments that made her worse, such as exercise programmes, delayed diagnoses, ignorance, apathy and stigma.”

Maeve was admitted to the Royal Devon and Exeter Hospital three times before her death. Like some other severely ill ME sufferers, in her final months she could not swallow or digest food. Both symptoms are well-known, common sequelae of at least two other neurological diseases, Parkinson’s and ALS; these symptoms get worse as the diseases progresses. Maeve hoped doctors at the large teaching institution in Devon would help. They did not. Ultimately, Maeve chose to simply go home with the expectation she would die there.

After her death, her parents asked for an investigation into the cause. The coroner said she was unable to hold any one individual responsible for Maeve’s death and concluded the young woman had died of natural causes resulting from ME. In other words—she died of ME.

Maeve’s mother, Sarah, noted that the coroner had at least documented the missteps in Maeve’s care at the Devon hospital. Journalist O’Neill was less sanguine: “There is no sign that anything will be done to tackle the coroner’s main concern — that care provision for people with severe ME is ‘non-existent’ in the NHS.”

On February 18, Helen Morgan, a liberal democrat MP, wrote an editorial for The Times about the government’s plan for ME, which she said “…has taken 33 months and five health secretaries for the government to get into a position to launch.” The plan was to be a “cross-government delivery plan for myalgic encephalomyelitis,” Morgan wrote.

The parents of Maeve, people suffering from ME, and those who care about them now must face yet a new horror: a plan that so many in the UK had hoped signaled a change in both tone and substance will have no money for its implementation. Budgets are being cut all over the industrialized world, and other diseases will surely end up starved for cash, too. The thing about ME is that it’s never had any money, nor has it ever had standing as a public health crisis requiring attention.

Helen Morgan referenced the problem last week in her editorial: “Over the past 12 years, the government has invested just £8 million in ME research,” she wrote.

That’s equivalent ten million US dollars ($10,000,000). Divide that sum by twelve for the time period Morgan cites, and the sum dwindles to an average of approximately $833,000 per year since 2013—slightly more than the average purchase price of a single family house in London.

What must happen to break the spell cast by Sir Wessely, who was energized by two psychiatrists with a theory that, reduced to its base element, arose from a powerful bigotry—hatred of women?