free counter
Health And Medical

Long COVID Was a Preventable Tragedy. Some people SAW IT PLAINLY COMING

Sept. 15, 2022 It will have been the beginning of new insight right into a debilitating illness. IN-MAY 2017, I was patient No. 4 in several 20 getting involved in a deep and intense study at the National Institutes of Health targeted at getting to the main factors behind myalgic encephalomyelitis/chronic fatigue syndrome, an illness that triggers extreme exhaustion, sleep issues, and pain, among other symptoms.

What the researchers found because they took our blood, harvested our stem cells, ran tests to check on our brain function, put us through magnetic resonance imaging (MRI), strapped us to tilt tables, ran tests on our heart and lungs, and much more may have helped prepare doctors everywhere for the avalanche of long COVID cases thats come alongside the pandemic.

Instead, we all have been still looking forward to answers.

In 2012, I was hit by way of a sudden fever and dizziness. The fever improved, but on the next six months, my health declined, and by December I was almost completely bedbound. The countless symptoms were overwhelming: muscle weakness, almost paralyzing fatigue, and brain dysfunction so severe, I had trouble remembering a four-digit PIN for 10 seconds. Electric shock-like sensations ran along my legs. At one point, when i tried to work, letters on my computer monitor began swirling around, a terrifying experience that only years later I learned was called oscillopsia. My heartrate soared when I stood, rendering it difficult to stay upright.

I learned I had post-infectious myalgic encephalomyelitis, also given the unfortunate name chronic fatigue syndrome by the CDC (now often called ME/CFS). The condition ended my career as a newspaper science and medical reporter and left me 95% bedbound for a lot more than 2 years. WHEN I read about ME/CFS, I came across a brief history of a sickness not merely neglected, but additionally denied. It left me in despair.

In 2015, I wrote to then-NIH director Francis Collins, MD, and asked him to reverse decades of inattention from the National Institutes of Health. To his credit, he did. He moved responsibility for ME/CFS from the tiny Office of Womens Health to the National Institute of Neurological Disorders and Stroke, and asked that institutes head of clinical neurology, neurovirologist Avindra Nath, MD, to create a report exploring the biology of the disorder.

However the coronavirus pandemic interrupted the analysis, and Nath gave his energy to autopsies along with other investigations of COVID-19. While he could be devoted and empathetic, the truth is that the NIHs investment in ME/CFS is tiny. Nath divides his time among many projects. In August, he said he hoped to submit the studys main paper for publication inside a couple of months.

In the spring of 2020, I along with other patient advocates warned a wave of disability would follow the novel coronavirus. The National Academy of Medicine estimates that between 800,000 and 2.5 million Americans had ME/CFS prior to the pandemic. Now, with vast amounts of people worldwide having been infected by SARS-CoV-2, the herpes virus that triggers COVD-19, the ranks of individuals whose lives have already been upended by post-viral illness has swelled into nearly uncountable millions.

Back July 2020, National Institute of Allergy and Infectious Diseases Director Anthony Fauci, MD, said that long COVID is strikingly much like ME/CFS.

It had been, and is, a preventable tragedy.

Alongside a great many other patient advocates, Ive watched in despair as friend after friend, person after person on social media marketing, describe the outward symptoms of ME/CFS after COVID-19: I acquired mildly sick; I thought I was fine then came overwhelming bouts of fatigue and muscle pain; my extremities tingle; my vision is blurry; Personally i think just like a have a never-ending hangover; my brain stopped working; I cant make decisions or complete daily tasks; I had to avoid exercising after short sessions flattened me.

Whats more, many doctors deny long COVID exists, in the same way many have denied ME/CFS exists.

In fact it is true that some, and maybe even many, people who have brain fog and fatigue following a mild case of COVID will recover. This happens after many infections; its called post-viral fatigue syndrome. But patients and an increasing number of doctors now recognize that many long COVID patients could and really should be identified as having ME/CFS, that is lifelong and incurable. Growing evidence shows their immune systems are haywire; their nervous systems dysfunctional. They can fit all the published criteria for me personally, which require six months of nonstop symptoms, especially post-exertional malaise (PEM), the name so you can get sicker after doing something, just about anything. Exercise isn’t advised for those who have PEM, and increasingly, research shows lots of people who’ve long COVID also cannot tolerate exercise.

Several studies show that around half of most long COVID patients be eligible for an analysis of ME/CFS. Half a large number is really a lot.

A researcher at the Brookings Institution estimated in a written report published in August that 2 million to 4 million Americans can’t work because of long COVID. Thats around 2% of the nations workforce, a tsunami of disability. Numerous others work reduced hours. By letting a pandemic virus run free, weve created a sicker, less able society. We are in need of better data, however the numbers that people have show that ME/CFS after COVID-19 is really a large, and growing, problem. Each infection and re-infection represent a dice roll a person could become terribly sick and disabled for months, years, an eternity. Vaccines decrease the threat of long COVID, but its not entirely clear how well they achieve this.

Well never know if the NIH study I took part in may have helped prevent this pandemic-within-a-pandemic. And until they publish, we wont know if the NIH has identified promising leads for treatments. Naths team is currently utilizing a protocol nearly the same as the ME/CFS study I took part directly into investigate long COVID; theyve already earned seven patients.

You can find no FDA-approved medicines for the core top features of ME/CFS. And because ME/CFS is rarely taught to medical students, few frontline doctors recognize that the very best advice to provide suspected patients would be to stop, rest, and pace meaning to decelerate when symptoms worsen, to aggressively rest, also to do significantly less than you feel it is possible to.

Therefore, an incredible number of long COVID patients stumble along, lives diminished, in a nightmare to be horribly sick with little help a dire theme repeating itself again and again.

Again and again, we hear that long COVID is mysterious. But a lot of it isnt. Its a continuation of an extended history of virally triggered illnesses. Properly identifying conditions linked to long COVID removes most of the mystery. While patients will undoubtedly be astonished to be identified as having a lifelong disorder, proper diagnosis may also be empowering, connecting patients to a big, active community. In addition, it removes uncertainty and helps them know very well what to anticipate.

A very important factor thats given me along with other ME/CFS patients hope is watching just how long COVID patients have organized and be vocal advocates for better research and care. Increasingly more researchers are finally listening, knowing that not only will there be so much human suffering to tackle, however the possibility to unravel a thorny but fascinating biological and scientific problem. Their findings in long COVID are replicating earlier findings in ME/CFS.

Research on post-viral illness, as a category, is moving faster. And we should hope answers and treatments will inevitably follow.

Read More

Related Articles

Leave a Reply

Your email address will not be published.

Back to top button

Adblock Detected

Please consider supporting us by disabling your ad blocker