COVID has long been a preventable tragedy. Some of us saw it coming

September 15, 2022 – It should have been the start of a new insight into a debilitating disease. In May 2017, I was patient number 4 in a group of 20 people participating in a deep and extensive study at the National Institutes of Health aimed at getting to the root causes of myalgic encephalomyelitis/Chronic Fatigue SyndromeIt is a disease that causes extreme fatigue, trouble sleeping, and pain, among other symptoms.

What researchers found as they took our blood, they harvested us Stem CellsThey ran tests to check brain function, and put us in service MRI (MRI), tied us to tilt tables, ran heart-lung tests, and more could have helped prepare doctors everywhere for a collapse. COVID long Cases that come along with pandemic.

Instead, we’re all still waiting for answers.

In 2012 I had a sudden fever and dizziness. The fever improved, but over the next six months, my health deteriorated, and by December I was completely bed-bound. The numerous symptoms were overwhelming: muscle weakness, almost paralysis fatigue, severe brain dysfunction, had trouble remembering a four-digit PIN for 10 seconds. Electric shock-like sensations ran up and down my legs. At some point, while I was trying to work, messages on my computer screen started spinning around, a terrifying experience that I learned only years later was called oscillopsia. My heart rate rose when I stood up, making it difficult to stay upright.

I learned that I had post-infective encephalomyelitis, also giving the unfortunate name Chronic Fatigue Syndrome By the CDC (now known as ME/CFS). The disease is over career path career path As a news reporter and science and medical journalist she has left me bedridden at 95% for over two years. I read About ME/CFS, I discover a history of a disease that is not only ignored, but denied. You have left me in despair.

In 2015, I Wrote to then-National Institutes of Health Director Francis Collins, MD, asking him to reverse decades of inattention from the NIH. To his credit, he did. Transferring responsibility for ME/CFS from the Small Office of Women’s Health to the National Institute of Neurological Disorders and Stroke, and requesting the Head of Clinical Neurology at that institute, Neurovirologist Avendra NathMD, to design a study that explores the biology of the disorder.

But the coronavirus pandemic boycottNath has given his energy to autopsies and other investigations into COVID-19. While he is loyal and sympathetic, the truth is that the National Institutes of Health Investing in ME/CFS young. Nath divides his time between several projects. In August, he said he hoped to have the study’s lead paper for publication “in a few months”.

In the spring of 2020, me and other sick advocates were warned A wave of disability will follow the novel coronavirus. National Academy of Medicine Estimates That between 800,000 and 2.5 million Americans had ME/CFS before the pandemic. Now, with billions of people all over the world getting infected SARS-CoV-2, the virus that causes COVD-19, swells the ranks of people whose lives have been upended by post-viral illness almost infinite Millions.

Back in July 2020, National Institute of Allergy and Infectious Diseases Director Anthony Fauci, MD, said long-term COVID was “a lot like” ME/CFS.

It was and still is a preventable tragedy.

Along with many other patient advocates, I watched desperately as friend after friend, person after person on social media, describing ME/CFS symptoms after COVID-19: “I just got mildly ill”; “I thought I was fine – then came the overwhelming bouts of exhaustion and muscle pain“My limbs are trembling” “My vision is blurred” “I feel like I have an endless headache” “My brain has stopped working” “I can’t make decisions or complete daily tasks” “I had to stop” Exercise After short sessions, you flattened me.

Moreover, many doctors have long denied the existence of COVID, just as many have denied the existence of ME/CFS.

And it is true that some, or perhaps even many, people who experience brain fog and fatigue after a mild case of COVID will recover. This happens after several infections. It’s called post-virus fatigue Syndrome. But patients and a growing number of clinicians are now realizing that many long-term COVID patients can and should be diagnosed with ME/CFS, which is irreversible for life. Mounting evidence emerges Immune systems are wires; they Nervous system disorder. It suits everyone Published Standards For me, that requires 6 months of persistent symptoms, most notably post-exertion malaise (PEM), the noun that makes you sicker after doing something, just about anything. Playing sports It’s not recommended for people with PEM, and research increasingly shows that many people who have been sick with COVID for a long time also cannot tolerate exercise.

many of studies show This is about Half Among all the long-standing COVID patients are eligible for a diagnosis of ME/CFS. Half a large number is a large number.

Research fellow at the Brookings Institution estimated In a report published in August, he said 2 to 4 million Americans can no longer work due to prolonged COVID. That’s up to 2% of the country’s workforce, a disability tsunami. Many others work reduced hours. By allowing the pandemic virus to spread, we have created a sicker, less capable community. We need better data, but the numbers we’ve shown are post-COVID-19 ME/CFS is a big and growing problem. Each infection and re-infection represents a roll of the dice with which a person can have a terrible, disabling illness for months, years and a lifetime. Vaccines It reduces the risk of contracting the COVID virus for a long time, but it is It’s not entirely clear how good that is they do it.

We’ll never know if the NIH study I was involved in can help prevent this pandemic within a pandemic. Until it is published, we won’t know if the National Institutes of Health have identified promising leads for treatment. Nath’s team is now using a very similar protocol to the ME/CFS study I was involved in to investigate the long COVID; They have already brought in seven patients.

There are no FDA approved medications for the essential features of ME/CFS. Because ME/CFS is rarely taught to medical students, few frontline clinicians realize that the best advice to offer suspected patients is Stop, rest, and hurry up It means slowing down when symptoms get worse, resting vigorously, and doing less of what you feel like doing.

And so, millions of long-time COVID patients, their lives diminished, stumble into a nightmare of terrible disease with little help — a painful subject that repeats itself over and over again.

We hear over and over again that the long COVID is a mystery. But many of them are not. It is a continuation of a long history of diseases caused by viruses. Correct identification of conditions related to the prolonged COVID removes much of the mystery. While patients will be surprised when diagnosed with a lifelong disorder, a proper diagnosis can also be beneficial, connecting patients to a large, active community. It also removes uncertainty and helps them understand what to expect.

One of the things that has been given to me and other ME/CFS patients is to watch how long COVID patients stay Organizer and to become vocal advocates for better research and care. More and more researchers are finally listening, realizing that there is not only so much human suffering to address, but the opportunity to unravel a thorny but fascinating biological and scientific problem. Their findings in COVID long are Repetition earlier the findings In ME/CFS.

The search for post-viral disease, as a category, is moving faster. And we should hope that answers and remedies follow soon.