Ashanti Daniel, a Beverly Hills nurse, sought help from an infectious disease doctor in the fall 2016. She was too tired to get up from the shower four months before she fell ill with a virus.She said that the appointment took five minutes. She said that the doctor did not perform a physical examination or check her vitals. His diagnosis was that her illness was psychogenic and a result of something psychological.She said that I felt betrayed. At the very least, what I said to him about my body's condition should be credible.Daniel made the decision to go through with whatever was bothering her after her appointment. Daniel, a Black mother of two was able to attend a yoga class, something she had done before her illness. She remembers thinking that it was good for her body and spirit. What could possibly go wrong?After feeling ignored by the medical system for too long, ME/CFS patients believe that the attention given to Covid-19 and long Covid is a turning point. Photograph by Studio 642/Getty Images/Tetra Images RFAlthough she made it through the class without any problems, she was exhausted a few days later. Daniel was unable to get out of bed for several days. Her health declined over the next year. She could not bear to see the television screen and was unable to walk long distances. She said that she once went several months without ever traveling more than a few blocks from her kitchen. Because of her disability, she quit her job. I could not be the mother I used be. She said that I could not be the nurse she used to be.A doctor diagnosed her with myalgic Encephalomyelitis. Also known as chronic fatigue syndrome (ME/CFS), it was eventually confirmed.ME/CFS sufferers often get sick with an infection-like condition and then experience debilitating symptoms like fatigue, brain fog, dizziness, and inability to stand without falling. Post-exertional malaise (PEM), a flare up of symptoms following physical or mental activity is a hallmark of this condition. Daniel also experienced it. There is no known cure, test, or cause.Many ME/CFS sufferers, mainly women, have felt dismissed by their doctors for being too complicated, difficult, or emotional. They also feel that their physical conditions are completely in their heads.They hope that the attention paid to Covid-19 and its less well-understood extended version, also known colloquially under the name long Covid, will mark a turning point for ME/CFS.Although research into long Covid is still in its infancy, it appears that the condition is very similar to ME/CFS.Every cloud has a silver lining. Anthony Komaroff, professor at Harvard Medical School and author of "Post-Infectious Fatigue Syndromes," stated that he sees the increased attention on this condition as a silver lining.Congress approved $1.15 billion for research on the long-term consequences of SarsCoV-2 infection in December. After months of lobbying, long-Covid advocacy organizations joined hands with ME/CFS patients.21 patient advocacy groups formed the Long Covid Alliance over the winter. They called for an acceleration in research into post-viral syndromes. They want to increase understanding of long Covid as well as other post-infectious diseases such ME/CFS and postural orthostatic Tachycardia Syndrome (Pots), mast Cell Activation Syndrome, and other disorders in the autonomic nervous systems.An adult survey on people who suffered from Covid revealed that nearly two-thirds of them reported feeling fatigued, short of breath, and brain fog for six months or more. Photograph by Hyeonjeong Hwang/Getty Images/EyeEmThis is an incredible, once-in-a generation research opportunity that we can offer Covid-19 sufferers and those who have been long Covid-sufferers. Emily Taylor, director for advocacy at Solve CFS was inspired to get involved in ME/CFS research when her mother was diagnosed.Experts in this field aren't surprised at the rise of Covid. Komaroff said that lingering fatigue syndromes have been documented in scientific literature for many decades. These are caused by infections with bacteria, viruses, fungi, and protozoa. A number of health care workers in Toronto who were struck by Sars virus infection in 2003 experienced permanent disability and were unable to work for at most one year. They experienced the same symptoms as ME/CFS and long Covid sufferers: weakness, fatigue, and muscle pain.Komaroff stated that about one in ten patients who had been exposed to infectious agents had suffered from lingering fatigue syndrome. Komaroff predicted that 20 million cases of long Covid could be seen if this holds true for Covid-19. This would lead to a surge in patients suffering from post-infectious symptoms, which could be tracked from acute illness to chronic disease. This work would attract new researchers and clinicians.With the increase in talent and financial support, I believe we will likely get fundamental answers to long Covid and ME/CFS within five years. Komaroff says fundamental answers are good diagnostic tests and effective treatments. Komaroff wants to see patients with ME/CFS and long Covid.Long Covid, also known as post-acute sequelae SarsCoV-2 infection, is not well understood. Some of the initial work was done by patients, who set up an online support group for patients called Body Politic Covid-19. They surveyed 3,762 adults with Covid-19. Most of them were white women between 30 and 60 years old who reside in the United States.Pre-print results were published in December. They showed that nearly two-thirds of the respondents reported having symptoms for six months or more, even though they had never received hospital care for Covid. Common symptoms included fatigue, brain fog, and shortness of breath. Many people reported that they experienced a relapse due to stress, exercise, or mental activity.More studies have been done to confirm the long-lasting effects of Covid-19. According to a Lancet Psychiatry report, one-third of those diagnosed with Covid-19 were found to have some form of neuropsychiatric condition within six month. Another study found that one-third of the 177 Covid-19 patients who were treated at Washington University for mild acute illnesses had persistent symptoms up until nine months later.Ashanti Daniel says, "Imagine what could happen to nurses of color, particularly women who aren't healthcare professionals." Photograph by Philip Cheung/The GuardianBecause they don't know what it is like, I feel terrible for people with long Covid. They don't plan to be sick for more than 10 or 11 years. Tracy Duvall, who is a social scientist and has been living with ME for over a decade, described that as a terrible tragedy. He believes that he contracted Covid-19 on September 2020, which triggered a relapse in his ME/CFS.He stated that patients with both conditions were sharing online information about what had helped them. He says that ME/CFS patients shared their opinions on drugs, treatments, and doctors while also benefiting from resources for Covid long-term patients.Nina Muirhead is a Buckinghamshire surgeon who expressed hope that doctors and other healthcare workers would realize that ME/CFS and long Covid caused real suffering. She said that this is a real illness and it's time to stop dismissing patients.Muirhead became a champion for ME/CFS after being diagnosed with the condition in 2018. Muirhead believed ME/CFS was a result of anxiety and depression before her illness. She developed ME/CFS in her thirties while she was managing a surgery practice for skin cancer patients.These symptoms were completely ignored until I could not function. She said that she was then bed-bound and in need of a wheelchair. Muirhead temporarily moved back in with her parents because she was unable to care for her two children with her husband.Muirhead stated that her colleagues did not know how to help patients suffering from the confusing mix of symptoms associated with ME/CFS. This confusion was further exacerbated by the lack of a single diagnostic test, or biomarker. Many people blamed the patient for not trying harder to improve their mental health.She said that there is a huge problem in that the medical profession doesn't know the difference between anxiety and a multi-system post-viral disease.A debate has raged since the 1980s over whether ME/CFS may have a psychological component. Daniels' physician suggested that the condition might be psychogenic.The Lancet published the Pace trial results in 2011. This randomized controlled trial provided strong evidence that exercise and behavioural therapy were the best treatments for ME/CFS. It also indicated that the illness may have psychological origins.Patients and other researchers strongly opposed the trial and forced the authors to disclose their raw data in court. They also criticized the use of a flawed definition of ME/CFS by the researchers, which led to patients being recruited who were suffering from depression and not ME/CFS. They also pointed out that exercise can cause post-exertional malaise, which can make people sicker.For the past 30 years, the dominant approach has been to believe that exercise and psychotherapy can cure people. It is based on horrible research and prejudicial ideas, according to David Tuller (Senior Fellow in Public Health Journalism at the University of California Berkeley, Center for Global Public Health).Things are changing. The 2017 recommendation of cognitive behavioural therapy and graded exercises by the US Centers for Disease Control and Prevention was dropped by the CDC. The UK's National Institute for Health and Care Excellence also followed suit. In November, it released draft guidelines for ME/CFS. It stated that neither cognitive behavioural therapy nor exercise were effective treatments. However, some symptoms might be improved by the latter.What we are currently seeing is a natural global experiment in which many people who have been affected by a viral attack are experiencing non-specific, long-lasting symptoms. It's not psychogenic according to David Tuller, a public health expert. Photograph by Thomas Northcut/Getty ImagesPatients say that change is slow. Sanna Stella, Chicago's mental health therapist with ME/CFS, stated that she never disclosed her illness to her colleagues while she was training as she was concerned about stigma. She said that while part of her feels the need to tell people, what if they think it will affect their perceptions of my competency?Many ME/CFS experts hope that long Covid research will end the debate about whether these disorders can be attributed to psychogenesis.We are currently conducting a worldwide natural experiment in which many, many people who have been affected by a viral attack are experiencing non-specific, prolonged symptoms. This is not a crazy experiment. Tuller said it is not psychogenic.He acknowledged the complexity of these conditions and that mental health plays a role in some people's feelings. A debilitating illness or stress could also trigger anxiety and depression.He said that he believed that the phenomenon was occurring worldwide and that it wasn't something to be dismissed.Daniel stated that she was concerned about a key difference between ME/CFS suffers and those with long Covid. While most ME/CFS victims are white, Covid is disproportionately affected by communities of colour. She stated that many people wouldn't have the resources or private insurance to pay for specialist visits and wheelchairs. Black patients are more likely not to receive pain medication.Daniel is concerned that people of color with long Covid may be more likely to be dismissed if they present to doctors with unusual symptoms and no way of confirming their diagnosis.She said that if this happened to me as a nurse imagine what it would happen to other people of color, particularly women, who aren't healthcare professionals.Chronic pain sufferers have been told for years that it is all in their heads. It is now clear that this is false. The pain that cannot be seen explains why doctors are still playing catch-up with chronic pain conditions such as endometriosis, migraine, and other pain conditions. It also explains what they need to do about long Covid.
