The day Dr. Elizabeth Dawson discovered COVID-19, waking up to find that she had a bad hangover. Four months later, in February 2021, she tested negative for the virus, but her symptoms only worsened.
Dawson Dr. David Goldstein, head of the Saxon Institute of Health Autonomous Medicine, called the “long-run” COVID patients “bark and bark” who remain ill long after a negative test for the virus. A significant percentage suffer from syndromes that some doctors understand or treat, primarily postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). In fact, it was common to wait a long time to see specialists for these syndromes before the new epidemic of epidemics in the general population began to erupt. For some, the result is a life change.
Before the final fall, Matt Dawson, 44, of Portland, Oregon, regularly visited 225 patients, cared for his one-year-old daughter, and traveled long distances. Today, her heart pounded as she tried to stand up. Her severe headache, constant nausea, and fog are so extreme that she says, “I feel like I have dementia.” Her fatigue is severe: “It seems that all my energy has been sucked out of my soul and bones.” She can’t stand for more than 10 minutes without feeling dizzy.
Through his own research, Dawson realized that he had specific symptoms of POTS, a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and blood collection. It is a serious condition that sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before COVID-1, an estimated one million Americans had POTS.
Many of those patients reported that it took many years to find them. With his own dubious diagnosis on hand, Dawson quickly discovered that there were no specialists in autonomic disorders in Portland – in fact, the only board-certified autonomous physicians in the United States are some experts in other fields as well. And treats POTS and similar syndromes from the same angle. Dysautonomia International, a non-profit organization Provides a list A handful of clinics and about 1 US0 doctors who have been recommended by patients and agreed to be List.
Fortunately, Dawson was able to use his contacts in the medical community for an appointment with a Portland neurologist within a week and was diagnosed with POTS and Chronic Fatigue Syndrome (CFS). The two syndromes have overlapping symptoms, often with severe fatigue. For people who do not have such a connection and knowledge of the medical world, especially low-income people and black women, long COVID affects the unpleasant proportions, appointments should usually be made months in advance.
Renowned researcher who has been treating Pots and CFS patients for 2 years, Dr. Johns Hopkins University in Baltimore. Peter S. Rowley says that every doctor who specializes in POTS is looking at long-term CoAID patients with POTS, and every long-term COVID patient. He also saw pots with CFS. He expects a lack of available treatment for these conditions to gradually create a public health condition. “Decades of neglect of POTS and CFS [chronic fatigue syndrome] We’re embarrassed to fail miserably, “says Roe A paper writer How COVID-19 can trigger CFS.
The prevalence of POTS was documented separately International Survey Of the 7,7622 long-COVID patients, the researchers concluded that all COVID-19 patients who had rapid heartbeat, dizziness, brain fog or fatigue “should be checked for POTS.” Addressing the growing case will require “significant infusion of health care resources and significant additional research investment,” the American Autonomous Society recently said. Statement.
Lauren Steels, who founded Dysautonomia International For decades after the discovery of POTS in 2012, suffering patients have expressed growing concern that “tests and treatments are needed but there is no growth of skilled doctors in autonomic nervous system disorders”. On the other hand, she hopes that increasing awareness among physicians will at least diagnose dystotonomia patients faster than in the past.
Congress has allocated Health 1 billion to National Institutes of Health to study the Covid 1 conditions over the next four years, and requests for proposals have been issued. Goldstein of the National Institutes of Health says the tragic experience of the epidemic opens up a special opportunity for progress in treatment: Researchers could study a large sample of people who had the same virus at exactly the same time, but some recovered and some did not. .
Chronic symptoms are common in people infected with SARS-CoV-2. A Study at the University of Washington, Washington Published in February Journal of the American Medical AssociationThe network found that 27% of COVID-1 survivors aged 1 to 3 years had persistent symptoms three to nine months after a negative test for the virus. The percentage was slightly higher for middle-aged patients, and for patients 65 and older. 43%. The most common complaint: persistent fatigue. A Mayo Clinic Study Published this month, it was found that long0% of long-haulers complained of fatigue and about half of “brain fog”. Less common symptoms are swollen heart muscle, abnormal lung function, and severe kidney problems. Symptoms of autonomic dysfunction are seen in patients with mild, moderate or severe COVID-19 symptoms.
Larger studies are still needed to determine the exact extent of the issue. However, “only a small percentage of the millions of people infected with COVID will suffer long-term consequences,” says Roe, “We are talking to a large crowd of patients, and our clinical capacity is not able to care for them. “
Yet even in these new cases some physicians waive terms like POTS and CFS, both more common in women than men. Without any biomarkers, some have argued that the syndrome is sometimes psychological.
POTS patient experience – and Jacqueline Cinnamon, current patient advisory board member of Dysautonomia International, is unique. She fell ill in college 1 year ago, and dozens of doctors saw her recurring heart, severe fatigue, persistent vomiting, fever and other symptoms looking for an explanation. “For many years without results, she had seen infectious diseases, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine – and a psychiatrist,” she says, “because some doctors clearly say I’m just a hysterical woman.”
It took him three years to get POTS. The test is simple: patients lie down for five minutes and take their blood pressure and heart rate. They either stand or tilt -0-8080 degrees and retract their vital signs. The POTS sufferer’s heart rate increases to at least be0 beats per minute, and often reaches 120 beats per minute within 10 minutes. Symptoms of POTS and CFS range from mild to mild.
The doctor who diagnosed Cinnamon told him that he did not have the skills to treat POTS. Nine years after the onset of the disease, she finally received treatment that reduced her symptoms. As long as there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of drugs, including fludrocortisone, Usually prescribed for Addison’s disease, it can improve symptoms. Some patients are also assisted by specialized physical therapy, which involves the therapist assisting in the exercise while the patient is asleep, then using machines that do not require stand, such as crying machines and exercise bicycles. Recovery over time; They do nothing.
Dawson says she cannot imagine the “darkness” experienced by patients who lack access to a network of healthcare professionals. A retired endocrinologist asked her to check her adrenal function. Dawson discovered that her glands were producing only cortisol, a hormone important for body function. “Medical progress is everyone’s best hope,” she says.
Steels, whose organization provides research funds and physician and patient resources, is optimistic. She says, “Not all major medical centers in the world in history have been studying the same disease at the same time with the same urgency and support.” “I hope we understand COVID and post-COVID syndrome during record time.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Combined with policy analysis and voting, KHN is one of the three major operating programs KFF (Kaiser Family Foundation). KFF is an approved non-profit organization that provides information to the nation about health problems.