September 15, 2022 – It was supposed to be the beginning of a new understanding of debilitating pain. In the year In May 2017, patient number 4 was participating in a thorough and thorough study of the National Institutes of Health in a group of 20 to find the main causes of myalgic encephalomyelitis.Chronic fatigue syndromeExtreme fatigue, sleep issues, and sickness among other symptoms.

What the researchers found when they took our blood, our crops Stem cellsThey did experiments to test our brain, they passed us Magnetic resonance imaging (MRI’s), made us stick tables, performed tests on our hearts and lungs, and more that could have helped doctors everywhere prepare for heavy rain. Long covid Issues that come with it Epidemic.

Instead, we are all still waiting for an answer.

In the year In 2012, I was struck by sudden fever and dizziness. The fever improved, but over the next 6 months, my health declined, and by December I was completely bedridden. Many of the symptoms were severe: muscle weakness, almost paralysis. Fatigue, and the mental problem is so severe, I had trouble remembering a four-digit PIN for 10 seconds. Sensations like electric shocks ran up and down my legs. Once, as I tried to work, the letters on my computer monitor started spinning, a terrifying experience I learned years later was called oscillopsia. When I stood up, my heart rate increased, making it difficult for me to stay upright.

I learned I had post-infectious myalgic encephalomyelitis, also given a bad name. Chronic fatigue syndrome At the CDC (now commonly known as ME/CFS). The pain ended mine Profession As a newspaper science and medicine reporter and 95% bedridden over 2 years left me. Like me Read As for ME/CFS, I’ve had a history of illness that was not only ignored, but denied. It has left me in despair.

In the year In 2015, I He wrote He went to then-NIH director Francis Collins, MD, and asked him to change decades of indifference from the National Institutes of Health. To his credit, he did. He moved responsibility for ME/CFS from the small office of women’s health to the National Institute of Neurological Disorders and Stroke and asked the institute’s chief of clinical neurology, a neurovirologist. It is AvindraMD, to design a study investigating the biology of the disease.

But the corona virus epidemic He stopped the studyAnd Nath has devoted his energy to covid-19 autopsies and other investigations. Although he is devoted and compassionate, the reality is that NIH’s. Investment in ME/CFS It is small. Nate divides his time between several projects. In August, he said he hoped to have the main paper of the study published “within a few months.”

In the spring of 2020, I and other patient advocates warned As a wave of disability follows the novel coronavirus. National Academy of Medicine Assumptions Before the epidemic, between 800,000 and 2.5 million Americans had ME/CFS. Now, billions of people around the world are infected with the virus. SARS– The number of people who have improved their lives with post-viral illness due to covid-2, the virus that causes covid-19, is increasing. It is incalculable. Millions.

In the year In July 2020, National Director of Allergy and Infectious Diseases Anthony Fauci, MD, said long-term covid is “very similar” to ME/CFS.

It was, and is, a preventable tragedy.

Along with many patient advocates, friend after friend, person to person on social media, I have watched in despair as they described ME/CFS symptoms post-Covid-19. “I thought I was fine – then I got really tired and… Muscle pain“; “My extremities tremble”; “My vision is blurry”; “I feel like I have an endless hangover”; “My brain stopped working”; “I can’t make decisions or carry out everyday tasks”; “I had to stop Exercise They flattened me out after a few short sessions.

Moreover, just as many doctors deny the existence of ME/CFS, they deny the existence of covid for a long time.

And it’s true that some, or perhaps most, people with brain fog and fatigue after a mild case of Covid will recover. This happens after many infections; It is called anti-virus Fatigue syndrome. But patients and a growing number of doctors are realizing that many long-term covid sufferers may be diagnosed with ME/CFS, which is lifelong and incurable. Growing data shows Immune systems are haywire; theirs Nervous system dysfunction. They are compatible with all Published requirements For MA requiring 6 months of continuous symptoms, especially after exercise Grief (PEM), a noun for feeling sick after doing something, almost nothing. Do exercise It is not recommended for people with PEM, and over time, studies show that many people with prolonged COVID cannot tolerate exercise.

Several Studies show The one around him Half All long-term covid patients are eligible for ME/CFS diagnosis. Half of a large number is a large number.

Researcher at the Brookings Institution Estimate According to a report published in August, 2 million to 4 million Americans will be unable to work due to prolonged covid. That’s up to 2% of the nation’s workforce, a tsunami of injuries. Many other people work reduced hours. By letting the epidemic virus run free, we have created a sick, helpless society. We need better data, but the numbers we have show that ME/CFS is a huge, and growing, problem post-Covid-19. Each infection and re-infection represents a roll of the dice that can leave a person seriously ill and disabled for months, years, even a lifetime. Vaccinations Reduce the long-term risk of covid, but it is. It is not entirely clear how good it is They do so.

We will never know if the NIH study I participated in could have prevented this epidemic—in an epidemic. And until they’re published, we won’t know whether the NIH has identified promising guidelines for treatments. Nat’s team is now using a very similar protocol to the ME/CFS study I was involved in to investigate long-term covid. They have already brought seven patients.

There are no FDA-approved medications for the main features of ME/CFS. And because ME/CFS is rarely taught to medical students, few front-line doctors realize it’s the best advice to give suspected patients. Stop, rest and speed – When symptoms worsen, that means slowing down, resting forcefully, and doing as much as you can.

And so, millions of long-term Covid sufferers stumble along, their lives dwindling, with little help in the nightmare of being horribly ill – a terrifying theme that repeats itself over and over again.

We keep hearing about the long covid mystery. But most are not. The long history of viral diseases continues. Accurate diagnosis of long-term covid-related conditions can remove many mysteries. While patients may be surprised to find out they have a lifelong disorder, the right diagnosis is empowering by connecting patients to a larger, more active community. It also removes uncertainty and helps them understand what to expect.

One thing that has given me and other ME/CFS patients hope is seeing how long covid patients last. They are organized. And be vocal advocates for better research and care. More and more researchers are finally listening, realizing not only the existence of a lot of human suffering, but also the opportunity to solve thorny but fascinating biological and scientific problems. It is their discovery in the long covid. Multiplication Earlier Findings In ME/CFS.

As a category, research on post-viral diseases is progressing rapidly. And we must hope that answers and cures follow soon.

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