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Tag: post-exertional malaise

Functional neurological disorder is not an appropriate diagnosis for people with long Covid

Long Covid — the name adopted for cases of prolonged symptoms after an acute bout of Covid-19 — is an umbrella diagnosis covering a broad range of clinical presentations and abnormal biological processes. Researchers haven’t yet identified a single or defining cause for some of the most debilitating symptoms associated with long Covid, which parallel those routinely seen in other post-acute infection syndromes. These include overwhelming fatigue, post-exertional malaise, cognitive deficits (often referred to as brain fog), and extreme dizziness.

Given the current gaps in knowledge, some neurologists, psychiatrists, and other clinicians in the United States, United Kingdom, and elsewhere have suggested that an existing diagnosis known as functional neurological disorder (FND) could offer the best explanation for many cases of this devastating illness.

We strongly disagree. Although prominent news outlets such as The New Republic and Slate have promoted this perspective, it is unwarranted to view long Covid through the lens of functional neurological disorder. Despite assertions of robust evidence from those most invested in promoting it, the FND construct is based largely on speculation and assumption. Successful treatments for long Covid are much more likely to emerge from investigations into the kinds of immunological, neurological, hormonal, and vascular differences that have already been documented than from the inappropriate imposition of an often ill-fitting diagnosis onto the broad swath of people with these prolonged symptoms.

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Long COVID still has no cure — so these patients are turning to research

When Lisa McCorkell got COVID-19 in March 2020, her symptoms were mild. Her physicians told her to isolate from others and that she would recover in a few weeks. But the weeks stretched into months and McCorkell, who was working on a master’s degree in public policy at the University of California, Berkeley, started having debilitating and bewildering symptoms: fatigue, dizziness and shortness of breath. Previously an avid runner, McCorkell found her heart racing from simple efforts.

She struggled to find an explanation, and soon realized that her physicians didn’t know any more about her condition than she did. To complicate matters, the limited availability of high-quality testing for the coronavirus SARS-CoV-2 in the early days of the pandemic left many of her doctors wondering whether her symptoms were really due to COVID-19 at all. “I didn’t have health-care providers that took me seriously,” McCorkell says. “That largely pushed me out of the health-care system.”

McCorkell turned instead to those who were experiencing the same puzzling symptoms and frustrations, joining a support group for people with what would eventually be called long COVID. As they compared notes, McCorkell and a handful of others — many of whom had research experience — realized that the information they were sharing might be helpful not only for those with long COVID, but also for those looking to study the condition. So, they founded a non-profit organization, called the Patient-Led Research Collaborative (PLRC), to design, provide advice on and even fund basic and clinical research into long COVID and other chronic illnesses.

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Four years after COVID’s arrival, Austin’s ‘long haulers’ still search for answers

They do an activity that would normally not be tiring — it can be a pretty small mental or physical activity, [like] folding laundry, reading an email — and it just knocks them out and makes all their symptoms worse.

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Long Covid causes changes in body that make exercise debilitating – study

Many people with long Covid feel tired, unwell and in pain for lengthy periods after exercise, and researchers say they now know why.

Experts say they have evidence that biological changes are to blame, such as severe muscle damage, mitochondrial problems and the presence of microclots in the body.

“It’s really confirming that there is something inside the body going wrong with the disease,” said Dr Rob Wüst, an author of the study at Vrije Universiteit (Free University) Amsterdam.

Long Covid is thought to affect tens of thousands of people in the UK alone, and many experience a worsening of symptoms for weeks after a single bout of exercise.

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Long COVID will take your health, your wealth — then it will come for your marriage

I’m talking about the workforce being diminished, the fact that people can’t think the way they used to think — we’re losing intellectual capital, we’re losing physical capital, we’re losing social capital.

And I wish people would understand the urgency of solving this, because what I’m seeing various countries doing in terms of their response to long COVID is they’re throwing a token amount of money towards research and saying, ‘Well, that will solve it’, patting themselves on the back without understanding that this is just as large an existential threat as climate change.

— Dr. David Putrino
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La COVID longue, un mal invisible (mais bien présent)

The majority of people experience extreme fatigue and many suffer post-stress discomfort, a kind of energy crash. Brain fog, lack of concentration and memory loss are also common symptoms.

Some people develop conditions and syndromes such as postural orthostatic tachycardia syndrome (POTS), characterized by dizziness and palpitations when a person is in a upright position. Others develop dysautonomia, which causes palpitations, pressure rises or falls, dizziness and gastric problems.

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How long COVID ruined my life, from crushing fatigue to brain fog

The change struck like a bolt of lightning from a clear blue sky. I’d been under the weather for a couple of weeks – nothing major, just a persistent cough, but for some reason I couldn’t seem to shift it. I took a day off work and carried on. Until 19 March, when I woke up and everything was different.

I was tired – overwhelmingly, crushingly tired, as if I’d been up for days, when in fact I’d slept all night – and I couldn’t think straight. When I tried to text my boss to tell him I wasn’t going to be able to make it into work, it took me more than an hour to string a sentence together.

Eventually, I got out a short apologetic message. Then I went back to bed, where I stayed for three days straight. It should have been scary, but I was too tired to be scared. The need for rest overwhelmed every thought or feeling.

—Rowland Manthorpe
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