There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME.
We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them, to study their disease or to trial possible drugs for them. We could choose to draw up such plans, to give the residents hope for their future health. But our country’s choice is to turn away and forget about these 250,000-plus inhabitants altogether. A city the size of Brighton that we deliberately ignore.
Worse, when we don’t ignore them, we blame them, telling them that they are all free to rise from their beds and wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. Make the effort, they say, and you will regain your health and previous lives.
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Outwardly, the city is quiet: its clocks have stopped, the streets are empty and house blinds are drawn. Inwardly, some lie still in their darkened rooms, masks on to protect them from their light sensitivity, keeping within their limited energy level, unable to tolerate sound, food and touch – lives spent in the shadows, barely lived. Inside, they feel like they have life-sapping toxins coursing through their veins. They say it feels like being on the verge of death; some even call it a “pseudo dying syndrome”.
A brief conversation with a friend, or washing their hair, or a sudden movement causes their symptoms to flare. This intensifies a fatigue that sleep cannot alleviate, and heightens their muscle or joint pain, headaches, or sensitivities to food, light or sound.
Simon McGrath, a close friend of mine who has lived with ME and written about it for 20 years, tells me:
I never know how much it is safe for me to do. It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day.
A ‘scandal’ so much more than chronic fatigue
Fatigue does not begin to describe this disease, despite its other name being chronic fatigue syndrome, or CFS. “A bad day is like a very bad hangover lasting 24 hours or more: the morning after, without the night before,” Simon explains. “But with much more pain, much more fatigue and very bad brain fog. I feel as if all the neurons in my skull have collapsed and disconnected from each other.” By spotlighting fatigue, ME’s other name fails to convey its many debilitating symptoms.
Simon – or, rather, his illness – is why I am a ME researcher. At university, where we met, he graduated with a biochemistry degree, fizzing with energy and talent. His ME soon dimmed his bright future but would not stop him making a difference to the ME community through his writing, and in helping me understand this horrible disease.
Treatment of ME has been called “the greatest medical scandal of the 21st century” by Guardian journalist George Monbiot. It is difficult to disagree when there is not a single bed anywhere in the UK set aside for treating people with severe ME.
The Times journalist, Sean O’Neill, says that ME is “routinely stigmatised and ignored by the NHS” and calls it “a scandal waiting for its Post Office moment”. O'Neill and his family had to endure the inquest into the death of his daughter, Maeve Boothby O’Neill, who died from natural causes because of severe ME.
Maeve’s ME left her unable to move, communicate or tolerate light, sound or touch. She did not want to go to hospital because, according to her GP, she “always gets worse when [she] goes in”.
Why is it that we give the least or worst treatments to those who are most in need?
Exile and misogyny
ME exiles people from their family, friends, and hoped-for futures. For most, this banishment is for life because nine in ten will never recover, and also because we expend too little effort to end this wicked disease.
That’s the irony – it’s society’s lack of effort to understand this illness and its treatment; our societal inertia; our failure to accept patients’ symptoms that perpetuate their exile.
So let’s attempt to diagnose what causes our apathy towards this cruel disease. The chief cause is misogyny, an ingrained prejudice born of the disease’s strong female bias: for every five women living with ME, there is only one man. It also has a strong age bias – young men are ten times less likely to be diagnosed with it than older women.
Another female-dominant disease is endometriosis. Like ME, the medical establishment is only just starting to appreciate the full nature of this debilitating condition.
In her memoir, Giving up the Ghost, the prize-winning novelist Hilary Mantel said of her endometriosis: “The more I said that I had a physical illness, the more they said I had a mental illness. The more I questioned the nature, the reality of the mental illness, the more I was found to be in denial, deluded.”
ME patients also report feeling that their concerns and symptoms are all too often dismissed.
Women with ME have spoken about their experiences of medical misogyny. For example, I talked to the Vikings actress Jennie Jacques who has spoken openly about her experiences of ME. She said that “Medical misogyny [is] at the heart of it. ME was psychologised when it most definitely shouldn’t have been”.
Soon after the World Health Organization recognised ME as a disease in 1969, the Royal Free Hospital ME outbreak of 1955 was re-evaluated by two psychiatrists, Colin McEvedy and William Beard. They reassessed this outbreak as “an epidemic of hysteria” principally because there was a “high attack rate in females compared with males”.
When later asked by ME specialist Byron Hyde MD “why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis?”, McEvedy responded devastatingly, saying: “It was an easy PhD, why not?”
This explains in part why the state invests a mere £3 per ME patient each year on researching this disease.
In the US, female-biased conditions attract less funding than male-biased ones. Funding for ME is 400-times less than for HIV/Aids, a male-biased disease, once their different disease burdens are accounted for.
In 2021, the previous UK government acknowledged the problem stating: “Studies suggest gender biases in clinical trials and research are contributing to worse health outcomes for women.”
COVID empathy?
The ongoing COVID-19 pandemic should have woken us up from our collective lethargy, and should have turned apathy into empathy. For then there were times when we all became housebound, often sick with the SARS-CoV-2 virus, and moreover so many of us – a million people, more than Liverpool and Manchester combined – came down with Long COVID.
Long COVID and ME share so many symptoms: post-exertional malaise, fatigue, widespread pain, disordered sleep, and brain fog. This overlap should never have surprised us – after all, two-thirds of people with ME report having had a triggering infection, such as glandular fever, just prior to their initial symptoms. Around 10% of people with glandular fever go on to develop ME symptoms.
It is as if we have our own brain fog, obscuring everyone with ME, forgetting how we – if fortune had been different – might have been them.
If we do not act to reduce the spread of infection, through immunisation and better ventilation, then numbers of people with long COVID – and other ME-like illnesses – will continue to rise, as infections so often trigger these conditions.
Read more: Long COVID: effects on fatigue and quality of life can be comparable to some cancers – new research
Harmful treatments
Going back to Simon, ME made him housebound, then bedbound. The NHS treated him with therapies based on increasing activity levels (Graded Exercise Therapy, or GET). This involves “gradually increasing physical activity to improve fitness and get the body used to activity again”.
The other NHS treatment approach, Cognitive Behavioural Therapy (CBT), is about changing “illness beliefs”. Here, patients are asked to examine “how thoughts, behaviour and CFS/ME symptoms interact with each other”.
But these treatments are ineffective as cures. And worse still, for the majority of 11,000 people with ME on one survey, GET did more harm then good.
In a different online survey, of 542 ME patients, 81% responded that their symptoms worsened because of GET treatment. National Institute for Health and Care Excellence guidelines, revised in 2021, say that CBT is not curative and that GET should not be offered to people with ME. Yet this new guidance has been implemented by only 28% of English NHS Trusts and Integrated Care Boards.
So, despite GET being described by patients as causing harm, and CBT as being ineffective as a cure, they are still being offered as a treatment. Over decades, very little has changed for Simon and hundreds of thousands of others with ME.
As we grew older together, Simon watched as I changed scientific career from physics into biology. I watched as his health might begin to rebuild, before suddenly collapsing, setting him back months or years. His ME has cost so much, he told me:
It’s so isolating and there’s so much loss. I got ill in the prime of life. It cost me relationships, my social life, my career, the chance of a family, the chance to contribute. Everything. Plenty of people seem to think it’s a lifestyle choice. Nobody would choose this.
As if his ME burden was not heavy enough, he started to carry other long-term health conditions, which each alone would bring me to my knees. Even though he does not feel it, I see his strength and resolution in adversity. At a time when biomedical evidence was rarely championed, he began his ME blog, and together with co-authors re-analysed clinical trial data. They concluded that the “recovery rates in the CBT and GET groups were not significantly higher than those in the control, no-therapy group”.
His own experience of ME, and his scientific eye-for-detail, make him a go-to person for people in the ME community.
In contrast, by 2013, and despite my decades of scientific training and academic privileges, I had done nothing for ME research. Why did I hesitate? “It’s not my scientific area,” I told myself. I trusted other researchers to identify effective and potentially curative treatments soon.
I was unprepared for the shock of my first ME research meetings. When studying other diseases, I had become used to vast conference halls brimming with celebrated scientists, enthusiastic PhD students, science prize winners, funders, and journal editors, all on the hunt for the next big breakthrough, grant or career opportunity.
For ME, however, the rooms were small and half-empty, funders and journal editors were nowhere to be seen, and researchers were talking at cross-purposes, showing sparse data from small-scale studies. These meetings were also empty of robust evidence for what physiologically had gone wrong for so many. At each meeting, a single word came to my mind: “forsaken” – those who others shun, neglect and abandon, whose existence is denied. I could not then, in all conscience, turn my back and walk away.
Not once have I regretted this decision. Its professional cost – measured in traditional markers of esteem, such as “glamour” publications, international conference and seminar invitations – has been more than offset by the fulfilment from working in this long-neglected field.
The extent of scientific disinterest in ME is clear: so far this year, there have been 17-times more publications mentioning “multiple sclerosis” than those mentioning ME or CFS, despite MS being rarer.
New study
My privilege now is to walk ME’s city of stolen futures alongside many people – like Simon – whose lost decades have been spent searching for their disease’s root causes. Together, for two-and-a-half years our team went back-and-forth with the Medical Research Council MRC and the National Institute for Health and Care Research NIHR. Eventually, we managed to secure a £3.2m award for DecodeME, a hunt for ME’s genetic causes.
DecodeME is not just the world’s largest study of the genetic causes of ME, but it was the first to place people with experience of ME at its heart. A total of 27,000 people with ME in the UK took part. We will report the study’s results as soon as we can. When we do, we will give them back first to the ME community whose data and samples we hold in trust.
The UK government has pledged to publish its delivery plan on ME in 2025. Andrew Gwynne MP, parliamentary under-secretary of state at the Department of Health and Social Care, has said that it “will focus on boosting research, improving attitudes and education and bettering the lives of people with this debilitating disease”.
This delivery plan will need to be radical.
Today, we urgently need more people to move through this city of lost hope to hear and to listen.
We need scientists to develop new vaccines against infections that trigger ME.
We need researchers, clinical specialists, hospital managers, and politicians to give deserved priority to this long-forsaken community and help lead these long-lost inhabitants back into the land of the well.
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Chris Ponting's research has been funded by MRC, NIHR, Action for M.E. and ME Research UK.
This article was originally published on The Conversation. Read the original article.
