‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome | Coronavirus | The Guardian
In the fall of 2016, Ashanti Daniel, a nurse in Beverly Hills, California, went to an infectious disease physician looking for answers about a weird illness she couldn’t shake. After falling sick with a virus four months earlier, she still felt too tired to stand up in the shower.
The appointment lasted five minutes, she said. The doctor didn’t do a physical exam or check her vitals. His assessment: her illness was psychogenic, resulting from something psychological.
“I felt betrayed,” she said. “What I was saying to him about what was happening to my body should carry credibility, at the bare minimum.”
After the appointment, Daniel decided to try to push through whatever was dogging her. Daniel, a Black single mother of two, went to a yoga class – something she used to breeze through prior to her illness. “It’s good for my body and spirit,” she remembers thinking. “What could go wrong?”
She got through class comfortably but a few days later, she became overcome with fatigue. For several days, Daniel couldn’t get out of bed. Over the next year, her health deteriorated. She couldn’t bear the lights from her television screen, and she struggled to walk any distance. At one point, she went months without traveling as far as her kitchen, she said. Eventually, she left her job because of her disability. “I couldn’t be the mother I used to be. I couldn’t be the nurse I used to be,” she said.
In time, a doctor gave her a diagnosis: myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
People with ME/CFS often fall sick with an infection-like illness, and then develop debilitating symptoms such as fatigue, brain fog and an inability to stay upright without dizziness. One of the hallmarks of the condition is post-exertional malaise (PEM) – a flare-up of symptoms after physical or mental activity, just as Daniel experienced. There is no confirmed cause, test or cure.
For years, ME/CFS patients – most of whom are women – have said they feel dismissed by the medical establishment as being too difficult or complicated or emotional, or are told their physical ailments are all in their head.
Now, they hope the attention heaped on Covid-19 and its poorly understood extended version, known colloquially as long Covid, will be a turning point in the story of ME/CFS.
Research into long Covid is in its infancy but, so far, the condition appears remarkably similar to ME/CFS.
“Every cloud has its silver lining. For me, the increased focus on post-infectious fatigue syndromes is a silver lining in my mind around the terrible dark cloud that is the pandemic of Covid,” said Anthony Komaroff, professor of medicine at Harvard Medical School, during a press briefing.
In December, Congress approved $1.15bn for research into the prolonged consequences of Sars-CoV-2 infection. This came after months of lobbying by long-Covid advocacy groups who had joined forces with patients with ME/CFS.
Over the winter, 21 patient advocacy groups formally came together as the Long Covid Alliance, calling for an acceleration of research into the post-viral syndromes. They hope to improve understanding of long Covid and other post-infectious illnesses such as ME/CFS, postural orthostatic tachycardia syndrome (Pots), mast cell activation syndrome and other disorders of the autonomic nervous system.
“This is an amazing, truly once-in-a-generation research opportunity that we have with Covid-19 and long Covid sufferers,” said Emily Taylor, director of advocacy at Solve CFS, who became involved with ME/CFS research after her mother was diagnosed with the condition.
Experts in the field say they are not surprised by the emergence of long Covid. Lingering fatigue syndromes have been reported in the scientific literature for decades, following infections with viruses, bacteria, fungi and protozoa, said Komaroff. After a Sars outbreak hit Toronto in the spring of 2003, a number of healthcare workers who had been struck with the virus remained disabled and unable to work for at least a year after their infection. They struggled with the same spectrum of symptoms as those with long Covid and ME/CFS: weakness, fatigue and muscle pain.
In previous studies of infectious agents, about one in 10 patients had developed a lingering fatigue syndrome, said Komaroff. If this remained true for Covid-19, as many as 20m cases of long Covid would appear in the next year, he predicted. The result would be a swell of patients with post-infectious fatigue syndromes who could be tracked from acute infection to chronic illness. The work would draw new scientists and clinicians to the field.
“Because of that surge in both financial support and talent, I think we’re likely to get some fundamental answers to both long Covid and ME/CFS in the next five years. And by fundamental answers, I mean good diagnostic tests and some effective treatments,” Komaroff. He wants studies to include people with long Covid and those with ME/CFS.
Little is known about long Covid, formally called post-acute sequelae Sars-CoV-2 infection. Patients led some of the initial work to recognize the condition, setting up an online patient-led support group called Body Politic Covid-19. With the help of citizen scientists, they surveyed 3,762 adults who had Covid-19, most of whom were white females between the ages of 30 and 60 who live in the United States.
The results, published as pre-print in December, showed that two-thirds reported symptoms lasting six months or longer, even though most never sought hospital care for Covid. Fatigue, shortness of breath, and brain fog were common ailments. Most reported a relapse of symptoms that was triggered by exercise, mental activity or stress.
Since then, more studies have confirmed the protracted effects of Covid-19. A report published in the Lancet Psychiatry found one-third of people diagnosed with Covid-19 were diagnosed with some type of neuropsychiatric condition within six months. Another showed that, among 177 patients with Covid-19 who were treated at the University of Washington for mostly mild acute illness, one-third had persistent symptoms up to nine months after illness.
“I feel so bad for [people with long Covid] because they don’t know what it’s like. They’re not planning to be sick for 10 or 11 years. That’s a horrible tragedy,” said Tracy Duvall, a social scientist who has lived with ME for about a decade. He believes he contracted Covid-19 in September 2020, triggering a relapse of his ME/CFS.
He said patients with both conditions had been sharing information online about what helped them. ME/CFS patients offered their advice on things such as drugs, therapies and doctors, while benefiting from resources designed for long Covid patients, he says.
Nina Muirhead, a surgeon in Buckinghamshire, England, said she hoped physicians and other healthcare workers would recognize that long Covid and ME/CFS caused genuine suffering. “This is a real disease and it’s time to stop dismissing patients,” she said.
Muirhead became an advocate for ME/CFS in 2018 after she was diagnosed with the condition, following an episode of Epstein-Barr glandular fever. Before her illness, Muirhead believed ME/CFS grew out of anxiety and depression. In her mid-3os, as she was running a surgical practice for patients with skin cancer, she became sick with headaches, sensitivity to light and muscle aches.
“I was completely ignoring these symptoms to the point where I couldn’t function at all. Then I was bed-bound and in a wheelchair,” she said. Muirhead moved back in with her parents temporarily because she felt unable to raise her two kids with her husband.
Muirhead said her colleagues didn’t know what to do for patients with the baffling mix of symptoms of ME/CFS. The lack of a single diagnostic test or a biomarker added to the confusion. Many attributed the symptoms to mental health, and blamed the patient for not working harder to get better, she said.
“There’s a major, major stumbling block and that’s that the medical profession still doesn’t know the difference between a post-viral multi-system disease and anxiety,” she said.
Since the late 1980s, a debate has raged over a psychological component to ME/CFS: is the condition psychogenic in origin, as Daniel’s physician had suggested?
In 2011, the Lancet published results from the Pace trial, a randomized, controlled trial that appeared to offer robust evidence that behavioural therapy and exercise were the best treatments for ME/CFS – an indicator that the illness was psychological in origin.
But patients and other researchers vehemently denounced the trial, eventually forcing the authors to release their raw data under court order. Among their criticisms, they said the researchers used a faulty definition of ME/CFS, which drew patients into the trial who had depression rather than ME/CFS. They pointed out that exercise can trigger post-exertional malaise and make people sicker.
“This idea that people can get cured by exercise and psychotherapy has been the prevailing kind of approach for the last 30 years. It’s based on terrible research and prejudicial ideas,” said David Tuller, senior fellow in public health and journalism at the University of California, Berkeley, Center for Global Public Health.
Things are changing. In 2017, the US Centers for Disease Control and Prevention (CDC) dropped its recommendation for cognitive behavioural therapy and graded exercise. In the UK, the National Institute for Health and Care Excellence followed suit. It released a draft of ME/CFS guidelines in November that said neither exercise nor cognitive behavioural therapy was an effective treatment, though the latter might improve some symptoms.
But change is happening too slowly, say patients. Sanna Stella, a mental health therapist in Chicago who has ME/CFS, said she had never revealed her illness to colleagues when she was training because she worried about stigma. “Part of me feels like I need to let people know, but … what if it affects their perception of [my] competency?” she said.
Many experts in the ME/CFS community hope that research into long Covid ends the debate over whether these disorders are psychogenic.
“Right now, what we’re having is a natural worldwide experiment, in which we’re seeing that many, many people after a viral assault are reporting prolonged, non-specific symptoms, and they’re not crazy. It’s not psychogenic,” said Tuller.
He acknowledged that these conditions were complex and mental health played a role – some people might feel worse because of stress and anxiety, and debilitating physical illness could trigger depression and anxiety.
“But I think we’re seeing worldwide that this kind of phenomenon happens and that we shouldn’t be dismissive,” he said.
Daniel said she was concerned about one key difference between ME/CFS patients and those with long Covid: most ME/CFS patients are white, but Covid disproportionately hit communities of colour. Many people would not have private insurance or resources to cover expenses such as wheelchairs and specialist visits, she said. Black patients are more likely to be denied pain medication.
Daniel fears that people of colour with long Covid are more likely to be dismissed if they show up in doctor’s office with a strange mix of symptoms and no way to confirm the source of their illness.
“If this could happen to me as a nurse, imagine what happens to other people of colour, especially women, who are not healthcare professionals,” she said.
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This content was originally published here.