Beth, from London – who is using a pseudonym for this story to protect her privacy – is 24 and has suffered from myalgic encephalomyelitis (also known as ME or chronic fatigue syndrome (CFS)) for 10 years. After a few years of relatively manageable symptoms, in recent months the pain and fatigue that the condition causes have worsened and she struggles to leave the house. She experiences muscle aches, pain and crushing fatigue as well as what doctors call brain fog – a symptom of ME that interferes with concentration, slows down thought processes and even causes slow or slurred speech.
Her symptoms became so bad recently that she had to take time out from her dream job. She has now been off work sick for six weeks and tells me that she is not sure if she will ever be able to return to full-time work.
Trinity is 27 years old and lives in Somerset. She has suffered from ME since she was six. She was pulled out of school when she was six and a half due to debilitating pain and fatigue. At 10 she became bedridden. She couldn’t tolerate light and didn’t have the energy to do everyday tasks such as feed herself. Years later, she still wears compression bandages to help with the constant pain in her limbs and her mother has to help her with meals.
Cass, 29, was in Melbourne, Australia, where she lives when she caught COVID-19. After four weeks of rest and after her doctors signed her off and said she had recovered from the virus, she went to a shift at the hospital where she works. She found that even standing on her feet at work caused throbbing pain, dizziness and severe sensitivity to light. She tried three more times to go back to work but the symptoms were overpowering. More than a year later, she still gets muscle aches, dizziness and shortness of breath.
Women who suffer from ME have been dismissed by the medical establishment for decades. Now, many of the symptoms associated with the condition are in the spotlight under a different name: Long COVID.
ME used to be known solely as chronic fatigue syndrome but the name was scrapped because it was fuelling misconceptions about the condition, such as that it is primarily a psychological condition or a form of depression rather than a physical disorder.
It is a debilitating disease that is characterised by severe pain all over the body, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.
It is a chronic, fluctuating, neurological condition whose symptoms affect many body systems, most commonly the nervous and immune systems. The physical symptoms of ME can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis and congestive heart failure, according to the campaign group Action for ME.
Women have two X chromosomes while men have only one. X chromosomes induce immune responses in the body so having more of them makes it more likely that the immune system will become overactive and attack itself.
Patients who suffer from ME, including all the women I spoke to for this story, have been ignored and dismissed by doctors who believe they are 'hysterical' or who mistake their physical symptoms for psychological ones, such as panic attacks or anxiety disorders.
One study found that 77% of ME patients reported having a negative experience with doctors. Another found that 57% said their doctors had treated them poorly. In another study, 66% of patients with ME believed that seeking care from a doctor actually worsened their condition.
Trinity told me this is definitely true for her.
“Doctors just don’t have any understanding of the condition,” she said. “My experience has left me with no faith that doctors will make a proper attempt to help me and I mostly manage my condition on my own.”
Sonya Chowdhury, chief executive of Action for ME, said she frequently hears from distressed patients who have been dismissed again and again by doctors.
Part of the problem is that doctors who do acknowledge the very real physical aspects of the disease often equate it with normal tiredness. But an ME Association spokesman told Refinery29: “The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”
Nearly a million people in the UK suffer from Long COVID – defined as having an acute COVID-19 infection from which they never fully recover. Sufferers report debilitating fatigue as the most common symptom, followed by shortness of breath, muscle aches and loss of smell.
Long COVID and ME are what doctors call post-viral illnesses. They have almost exactly the same symptoms and both involve patients becoming infected with a virus and never getting better. This is why the awareness raised by Long COVID could help sufferers of ME.
Dr David Strain, a senior clinical lecturer at the University of Exeter Medical School and a member of the NHS Long COVID Committee, told me that the spotlight on Long COVID might be the push we need to finally take ME seriously, and ultimately to discover a treatment to improve sufferers’ lives.
“We are looking at a whole collection of people with post-viral fatigue syndrome,” Dr Strain said. “The only difference with Long COVID is we know for sure what the original virus was.” That gives us a head start in terms of trying to understand who gets Long COVID and who doesn’t, he said.
On the other hand, Dr Strain said, doctors don’t have a clear picture of which viruses trigger ME. That’s because the condition is chronically underfunded and doctors haven’t yet developed a test to identify the different viral infections that can trigger the long-term illness.
So what do we know so far about who is most likely to get Long COVID? Well, Dr Strain said, it seems to be exactly the same group that is most likely to get ME: women, and in particular women who suffer from some kind of autoimmune deficiency such as asthma or eczema.
Women are also more likely than men to suffer from all underlying autoimmune conditions, said Dr Strain. Part of this comes down to the fact that women have two X chromosomes while men have only one. X chromosomes induce immune responses in the body so having more of them makes it more likely that the immune system will become overactive and attack itself.
As more and more patients come forward with Long COVID, doctors are noticing that they are the same group of people as those with ME – which strengthens the case for researching the two conditions together in the wake of the pandemic.
The government has awarded researchers £50 million to study Long COVID and try to find a cure. That research could do wonders for patients with ME, according to Dr Strain.
“If we can find out which antibody causes the fatigue symptoms, we can work out how to treat that specific antibody,” he said. “When there is a known antibody, we can start developing targeted treatments, and that will hopefully be the way forward coming out of this.”
Long COVID has spurred a new wave of research because it demonstrated on a grand scale what ME sufferers and specialists have been saying for years: there is a medical phenomenon whereby humans contract viruses from which they never recover. We do not yet have a test to identify these post-viral illnesses but they are very real.
“There are a lot of people with ME who are disgruntled because they’ve been talking about this for years and all of a sudden Long COVID comes along and people who have the same symptoms are getting attention and being taken very seriously,” Dr Strain said. “And I can totally understand why they are so upset.”
He added that hopefully this is a step in the direction of their disease being better appreciated and understood by more people, and a step towards a new treatment for the disease.
Chowdhury hopes that the rise of Long COVID will raise awareness for ME sufferers.
Doctors just don't have any understanding of the condition. My experience has left me with no faith that doctors will make a proper attempt to help me and I mostly manage my condition on my own.
“We are finally collectively thinking about post-viral illness and about the assault that your body experiences from a virus,” she said. “That means we can work towards a better understanding – at a scientific, physiological level – why some people recover and some people do not.”
Chowdhury said she has seen a spike in the number of sufferers approaching Action for ME in recent months. They read about Long COVID in the news and recognise their own post-viral symptoms – usually originating from a different virus – and are now able to work towards an ME diagnosis. In this way the conversation around Long COVID is increasing awareness, she said.
On the other hand, she said: “People with Long COVID are seeing how poorly ME patients get treated and they are trying to distance themselves from the stigmatised disease.”
Dr Strain says there are a few reasons why ME sufferers have been dismissed and mistreated by the medical establishment for so long.
The first is that doctors believe they are at the “end stage of medicine”. That means they think they know everything.
“We are taught that doctors these days have developed the best tests for everything and that there’s no more work to be done,” he said. “That means that if you have a condition that we don’t yet have a test for, it’s easier for them to say there is nothing wrong than to admit they don’t know.”
Medical schools just don’t teach doctors to say “I don’t know”, he said. That makes them very uncomfortable treating conditions that they can’t definitively diagnose.
“It’s not a problem with the patients,” he said. “It’s a problem with the doctors.”
As a result of this, in the 1980s, when many people were contracting glandular fever and not recovering, ME was derisively called “the yuppie flu”.
“Doctors decided it was just a bunch of women who got ill and liked taking a break, and decided to spend the rest of their lives in bed.”
I feel so angry when he says this because it is one of far too many examples of rampant sexism in the medical establishment, and one of far too many examples of conditions which are undertreated or stigmatised because they affect more women than men.
Chowdhury said the same thing happened in the 1955 Royal Free Hospital outbreak of encephalomyelitis – an inflammation of the brain and spinal cord that is believed to originate from a viral infection. In that outbreak, an unknown illness began infecting staff at the hospital and spreading rapidly, causing 255 people to be hospitalised with headaches and severe fatigue.
“Doctors and nurses were struck down with an unknown virus and some of them didn’t get better – and they were labelled hysterical,” she said.
Dr Strain said he faces an uphill battle trying to overcome that stigma.
But Long COVID could change that.
“The pandemic has opened our eyes to the fact that a ‘normal’ test doesn’t mean that nothing is wrong.”
On the other hand, Dr Strain and Chowdhury both said that there is a risk of Long COVID making things worse for ME sufferers. Dr Strain said that he, like Chowdhury, has seen the stigma attached to ME bleed into Long COVID, and patients want to dissociate themselves from the illness because of the shame attached to it. To me, that just shows that we need to be speaking up and fighting the ME stigma now more than ever.
That’s why, Chowdhury says, her organisation is calling for more research.
“This is such a fantastic opportunity to understand post-viral illness and I’m disappointed that there is not more funding going towards ME,” she said. “Soon it will be too late and when the next pandemic hits we will be once again underprepared.”
“This opportunity must not be missed.”