Long COVID Was a Preventable Tragedy. Some of Us Saw It Coming, Brian Vastag

John Mac · Sep 15, 2022

Not sure where to post this but it is mainly about ME/CFS

Sept. 15, 2022 – It should have been the start of new insight into a debilitating illness. In May 2017, I was patient No. 4 in a group of 20 taking part in a deep and intense study at the National Institutes of Health aimed at getting to the root causes of myalgic encephalomyelitis/chronic fatigue syndrome, a disease that causes extreme exhaustion, sleep issues, and pain, among other symptoms.

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

Instead, we are all still waiting for answers.

In 2012, I was hit by a sudden fever and dizziness. The fever got better, but over the next 6 months, my health declined, and by December I was almost completely bedbound. The many 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 up and down my legs. At one point, as 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 heart rate soared when I stood, making it difficult to remain upright.

I learned I had post-infectious myalgic encephalomyelitis, also given the unfortunate name chronic fatigue syndrome by the CDC (now commonly known as ME/CFS). The illness ended my career as a newspaper science and medical reporter and left me 95% bedbound for more than 2 years. As I read about ME/CFS, I discovered a history of an illness not only neglected, but also 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 small Office of Women’s Health to the National Institute of Neurological Disorders and Stroke, and asked that institute’s head of clinical neurology, neurovirologist Avindra Nath, MD, to design a study exploring the biology of the disorder.

But the coronavirus pandemic interrupted the study, and Nath gave his energy to autopsies and other investigations of COVID-19. While he is devoted and empathetic, the reality is that the NIH’s investment in ME/CFS is tiny. Nath divides his time among many projects. In August, he said he hoped to submit the study’s main paper for publication “within a few months.”
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https://www.webmd.com/lung/news/20220915/long-covid-preventable-tragedy-some-saw-it-coming

BrightCandle · Sep 15, 2022

Right at the beginning of the outbreak I had a look through the 3 ME/CFS papers from China around the SARS outbreak. They had about 50% of all sufferers with lasting symptoms and long term it was 10%, there was no one recovered years later, they called it what it was from the outset they didn't make up a new name for it they recognised it and diagnosed it like a competent healthcare system should. Then once the Irish nurses report came out (July 2020 I think) that 40% of them were suffering symptoms past the initial acute infection I figured it was a slightly milder SARs and figured it would show the same rough 20% of long term sufferers would end up with ME/CFS. Looks a little high based on the practical rate in the UK of ~3% but then some studies are finding it to be about 8% so its unclear if the ONS is missing them (the NHS certainly isn't diagnosing them) or something else is going on. This isn't the first epidemic to cause ME/CFS patients and it certainly wont be the last.

An epidemic of any type produces a bunch of ME/CFS patients, simple EBV infections seem to. Its just that doctors and researchers have been ignoring them for decades.

Trish · Sep 15, 2022

Very good article, I think. Thank you Brian Vastag.

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Long COVID Was a Preventable Tragedy. Some of Us Saw It Coming, Brian Vastag

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Long COVID Was a Preventable Tragedy. Some of Us Saw It Coming, Brian Vastag

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Trish Moderator Staff Member

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