Tag Archives: Chronic fatigue syndrome

Health

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

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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.”

In the spring of 2020, I and other patient advocates warned that 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 before the pandemic. Now, with billions of people worldwide having been infected by SARS-CoV-2, the virus that causes COVD-19, the ranks of people whose lives have been upended by post-viral illness has swelled into nearly uncountable millions.

Back in July 2020, National Institute of Allergy and Infectious Diseases Director Anthony Fauci, MD, said that long COVID is “strikingly similar” to ME/CFS.

It was, and is, a preventable tragedy.

Along with many other patient advocates, I’ve watched in despair as friend after friend, person after person on social media, describe the symptoms of ME/CFS after COVID-19: “I got mildly sick”; “I thought I was fine – then came overwhelming bouts of fatigue and muscle pain”; “my extremities tingle”; “my vision is blurry”; ”I feel like a have a never-ending hangover”; “my brain stopped working”; “I can’t make decisions or complete daily tasks”; “I had to stop exercising after short sessions flattened me.”

What’s more, many doctors deny long COVID exists, just as many have denied ME/CFS exists.

And it is true that some, or maybe even many, people with brain fog and fatigue after a mild case of COVID will recover. This happens after many infections; it’s called post-viral fatigue syndrome. But patients and a growing number of doctors now understand that many long COVID patients could and should be diagnosed with ME/CFS, which is lifelong and incurable. Growing evidence shows their immune systems are haywire; their nervous systems dysfunctional. They fit all of the published criteria for ME, which require 6 months of nonstop symptoms, most notably post-exertional malaise (PEM), the name for getting sicker after doing something, almost anything. Exercise is not advised for people with PEM, and increasingly, research shows many people who have long COVID also cannot tolerate exercise.

Several studies show that around half of all long COVID patients qualify for a diagnosis of ME/CFS. Half of a large number is a large number.

A researcher at the Brookings Institution estimated in a report published in August that 2 million to 4 million Americans can no longer work due to long COVID. That’s up to 2% of the nation’s workforce, a tsunami of disability. Many others work reduced hours. By letting a pandemic virus run free, we’ve created a sicker, less able society. We need better data, but the numbers that we have show that ME/CFS after COVID-19 is a large, and growing, problem. Each infection and re-infection represent a dice roll that a person may become terribly sick and disabled for months, years, a lifetime. Vaccines reduce the risk of long COVID, but it’s not entirely clear how well they do so.

We’ll never know if the NIH study I took part in could have helped prevent this pandemic-within-a-pandemic. And until they publish, we won’t know if the NIH has identified promising leads for treatments. Nath’s team is now using a protocol very similar to the ME/CFS study I took part in to investigate long COVID; they’ve already brought in seven patients.

There are no FDA-approved medicines for the core features of ME/CFS. And because ME/CFS is rarely taught to medical students, few frontline doctors understand that the best advice to give suspected patients is to stop, rest, and pace – meaning to slow down when symptoms get worse, to aggressively rest, and to do less than you feel you can.

And so, millions of long COVID patients stumble along, lives diminished, in a nightmare of being horribly sick with little help – a dire theme repeating itself over and over.

Over and over, we hear that long COVID is mysterious. But much of it isn’t. It’s a continuation of a long history of virally triggered illnesses. Properly identifying conditions related to long COVID removes a lot of the mystery. While patients will be taken aback to be diagnosed with a lifelong disorder, proper diagnosis can also be empowering, connecting patients to a large, active community. It also removes uncertainty and helps them understand what to expect.

One thing that’s given me and other ME/CFS patients hope is watching how long COVID patients have organized and become vocal advocates for better research and care. More and more researchers are finally listening, understanding that not only is there so much human suffering to tackle, but the opportunity 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 must hope answers and treatments will soon follow.

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‘Long Haul’ Covid Patients See Some Relief in 4-Week Treatment Program

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A protester holds up a placard demanding research into long covid during a demonstration in the UK this March.
Photo: Martin Pope/SOPA Images/LightRocket (Getty Images)

The results of a small study this week may offer some hope to people struggling with prolonged symptoms following a case of covid-19. The study found that long covid patients taking part in a rehabilitation program in Ireland, conducted online, experienced noticeable improvements in how their fatigue affected their well-being and daily functioning.

There is much that we’re still unsure about when it comes to long covid, from its likely causes to how often it happens (estimates range from the single digits to over 25% of covid-19 cases). And we know even less about the best ways to help sufferers recover from it.

There are dedicated long covid clinics in the U.S. and elsewhere, where patients might be given treatments like physical therapy, counseling, and medications to manage other conditions that could have arisen as a result, such as hypertension or diabetes. But information is sparse on how effective any of these interventions are at improving people’s symptoms or their overall quality of life. The new research, presented this week at the European Congress of Clinical Microbiology & Infectious Diseases, provides some preliminary data to that end.

The pilot study included 53 people who reported covid-related fatigue severe enough to impact their daily life. About two-thirds had been dealing with their symptoms at least 12 weeks to a year after their initial covid diagnosis, while a third had been experiencing them for over a year. Nearly three-fourths also reported breathing difficulties, and about half were experiencing cognitive dysfunction, often known as brain fog.

The rehab program they took part in was developed by occupational therapists at St James’s Hospital and Trinity College in Ireland and was adapted from interventions they’ve previously used to help patients with multiple sclerosis and other chronic conditions. It involved three 90-minute sessions with an occupational therapist over a four-week period, delivered online at the time due to pandemic precautions. These sessions focused on stress management, sleep hygiene, and training people to recognize the daily limits of their physical and mental energy before their symptoms worsen.

Before and after the program, patients were asked via survey about their levels of fatigue, well-being, and quality of life. By the end of the program, patients generally reported improvements in how they felt and in how their symptoms affected their lives.

“Initial results from our pilot program are highly promising,” senior study author Louise Norris, an occupational therapist at St James’s Hospital in a statement from the European Society of Clinical Microbiology and Infectious Diseases. “They show equipping patients with a range of practical techniques can result in meaningful improvements in fatigue and quality of life. Patients also have fewer concerns about their wellbeing.”

These results do come from a small sample size and have yet to be peer-reviewed, so they should be taken with added caution. The intervention also isn’t necessarily addressing the root cause of the symptoms, which may include persistent infection or an autoimmune dysfunction caused by the original infection. But it may help restore people’s ability to lead a functional life while dealing with their illness, the researchers note. And with the promising results from their pilot study now in hand, they’ve already begun to collect additional data from more patients—data that might someday show that these kinds of programs can be widely used to help patients find some semblance of normalcy again.

“There is an urgent need to find new and better ways of managing post-covid fatigue and its wide-ranging, and in some cases, devastating, effects on people’s lives,” said Norris.

Read more: The Challenges of Unravelling Long Covid

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Doctors Say Mild Covid-19 Likely Triggered Psychiatric Illness in Two Teen Patients

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A MRI scan of one of the patients, with the arrow pointing to a suspected lesion.
Photo: Bartley CM, et al/JAMA Neurology

Researchers in California suspect that covid-19 triggered sudden mental illness in at least two of their teenage patients. Though they caution that a causative link remains uncertain, they say they’ve found evidence of antibodies attacking the brain of their patients post-infection, which could help explain the psychiatric symptoms.

Since the very start of the pandemic, some researchers have warned that covid-19 could contribute to a wave of neurological illness, based on the history of previous pandemics. Since then, studies have shown that covid-19 survivors do seem to be at higher risk for ailments like depression and anxiety. Some researchers and patient advocates have also argued that long covid—the constellation of chronic symptoms reported by some survivors—can include neurological impairments.

The stress of simply having covid-19 could certainly influence a person’s mental health, as could the aftereffects of a severe infection and hospitalization. But it’s possible that the virus itself could directly impact the nervous system and brain, even in mild cases, and these interactions could then lead to a higher risk of neurological and psychiatric disorders. Because mental illness is unfortunately common and often linked to a variety of influences, it can be difficult to show cause and effect from any one thing, including a viral infection.

But doctors at the University of California, San Francisco (UCSF) Benioff Children’s Hospital say they’ve come across a few cases in the past year where covid-19 does seem to have been a primary trigger for a patient’s sudden mental illness. In a new paper published Monday in JAMA Neurology, they describe teen patients who developed newly documented psychiatric symptoms, including extreme mood swings, paranoid delusions, and suicidal ideation, after a confirmed but mild or asymptomatic case of covid-19. It’s the timing of these events that suggests the symptoms were connected to the infection, study author Sam Pleasure, a UCSF neurologist, told Gizmodo.

In the spinal fluid of two patients, the team also found antibodies to the coronavirus, known as SARS-COV-2, as well as autoantibodies to the nervous system. In one patient, these traitor antibodies seemed to target a gene responsible for making a protein called transcription factor 4 (TCF4), which is notable because variations of the gene have been linked to psychiatric disorders including schizophrenia. The patients had a history of some mental health problems, such as anxiety and tics, but not to the extent documented by the doctors.

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A third teenage patient had neither kind of antibody in their nervous system, and it was determined that the most likely cause of their symptoms was an unknown drug they had taken days earlier.

But with the other two, those antibodies indicate that the coronavirus can reach the nervous system and stir up trouble there. It may be that the virus isn’t directly causing these symptoms, but rather that it helps generate a self-destructive immune response.

“We know that covid-19 is a potent stimulus for increased inflammatory responses, and one possible cause of these symptoms is that they are associated with this ‘generic’ increase in inflammation,” Pleasure explained in an email.

In the two patients where covid-19 was seen as a likely trigger, the doctors chose to treat them with immunotherapy, including steroids to tamp down inflammation. One patient seemed to respond well and by a month later had stopped reporting delusions and twitching. The second patient seemed to respond modestly to the immunotherapy, and by the six-month mark they were still improved but continued to have memory problems and trouble concentrating.

The authors found other reports of similarly timed cases among hospitalized adult covid-19 patients. Pleasure noted that immune-related problems after an infection have been documented well before covid-19, often linked to viral infections. These post-infection cases in general seem to be rare, but there are still many unknowns.

“We don’t at this point know how common this is with covid-19 infection and may be seeing patients primarily because of the very large numbers of infected people at about the same time,” Pleasure said.

To better understand these cases and definitively establish a link between sudden psychiatric illness and covid-19 would require more research, which the authors say they’re conducting now.

“We are working on studying larger numbers of prospectively followed patients with post-covid neurologic and psychiatric symptoms,” Pleasure said. “We are also able to compare such patients to ‘controls,’ i.e. patients after covid without neuropsychiatric symptoms.”

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