Even performing a few simple tasks can leave Semhar Fisseha exhausted after her COVID diagnosis.
Helena Kubicka de Braganca
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Helena Kubicka de Braganca
Even performing a few simple tasks can leave Semhar Fisseha exhausted after her COVID diagnosis.
Helena Kubicka de Braganca
Before falling ill with the coronavirus in January, Semhar Fisseha was a healthy, active 39-year-old man.
She goes for walks every day and plans summer vacations with her nine-year-old daughter. Now, even activities that many take for granted can come with a hefty price tag.
“I woke up in a tired mood,” she said in a diary entry one October morning.
“I had a four-day activity yesterday – I shower, I shower my daughter, I go for a walk and I wash the dishes.”
Fisseha also had chest pain and heart palpitations.
“My heart rate went up and down erratically,” she said in another audio diary. “It lasted to 120 seconds, 130 seconds without any real activity.”
Fisseha is a senior administrator for Weill Cornell Medicine. Some days, she wakes up feeling optimistic, like she’ll be able to get through a lot of her chores: Shower, do a full day at work, prepare lunch and dinner for her daughter. .
But she can become exhausted just talking in work meetings, forcing her to rethink her plans.
The deeply exhausting Fisseha experience is one of the frequently reported long-term effects of COVID-19. It’s called “post-exercise discomfort,” which is a worsening of symptoms such as pain or fatigue after physical or mental exertion.
Semhar Fisseha had to be more calculating about how she spends her day.
Semhar Fisseha
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Semhar Fisseha
Semhar Fisseha had to be more calculating about how she spends her day.
Semhar Fisseha
“I’m active and socially active and going from there is basically going home and having to calculate the amount of energy I have for just the basic activities that I took for granted before – you do. to think about that?” she speaks.
The National Institutes of Health call these long-term effects “Post-acute sequelae of Sars-CoV-2 . infection“, or PASC.
One study found more than 200 persistent COVID-related symptoms, many of which affect multiple organs or systems inside the body. Some patients have problems with their autonomic nervous system, which is responsible for respiration, digestion and blood pressure. Some have grown mast cell activation syndrome, a condition that leads to an increased risk of anaphylaxis. Many people also report brain fog, which makes it difficult for their memory and ability to concentrate.
Johns Hopkins assembles a crack team
Patients with long-standing COVID are in dire need of answers that doctors may not have.
“It’s really important that we recognize and acknowledge that we don’t have all the answers,” said Dr Ann Parker, co-founder and co-director of the Johns Hopkins Post-Acute COVID Group. (JH PACT).
“[With] medicine, it’s rewarding to be able to point to a specific test and diagnosis and put them all together in a nice package with a neat bow. But a lot of things in medicine are messy, and this is one of them. “
No one really knows how common COVID is, but it’s not uncommon.
A study published in JAMA Network Open found that approximately 30% of participants of various ages reported persistent symptoms more than six months after their COVID-19 infection. The American Academy of Physical Medicine and Rehabilitation estimates that between three and 14 million people in the United States may experience persistent symptoms.
Other estimates, more conservative based on data from more than 1 million people in the UK, putting the prevalence of long-term COVID at around 5%. That equates to more than 2 million Americans.
There is no unified approach to long-term COVID treatment.
WPA Pool / Getty Images
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WPA Pool / Getty Images
There is no unified approach to long-term COVID treatment.
WPA Pool / Getty Images
For some people, prolonged COVID is temporary, and those symptoms may go away after a few months. For others like Fisseha, long COVID feels like a new reality.
“What complicates things more is that there is no way to handle cookies to access treatment,” said Dr. Alba Azola, co-director of the JH PACT programme.
“Certainly there are emerging patterns of clinical presentation, but every patient is different.”
Because there is no single treatment, Johns Hopkins brought together all kinds of specialists as part of the JH PACT. This includes physical therapists and rehabilitation specialists like Dr. Azola, as well as neuropsychologists and vascular researchers.
One of their approaches is simply timing.
Doctors typically spend 13 to 24 minutes with their patients. At JH PACT, Dr. Parker and other doctors spend at least an hour covering as much as they can, from past illnesses and conditions to family medical history. That can be a lot to remember.
“Sometimes it’s useful [if] “They keep a diary or take notes, which a lot of our patients do,” says Dr. Parker.
The more information a patient can share with her, the more she can focus on their most limiting symptoms.
“For some people, it can feel like there’s a mountain ahead of them, a mountain of different symptoms and challenges in their recovery. So I hope it helps if you can. break that down to make each part easier to understand, instead of Dr. Parker said.
What patients can learn from chronic fatigue syndrome
There is still a long way to go in understanding what persistent COVID is and how it affects the human body, not to mention predicting how long it may last until symptoms disappear, if any. .
Alison Sbrana understands better than most what “if” means.
The girl has myocarditis/chronic fatigue syndrome (ME/CFS). It is an illness with many symptoms that overlap with long-standing COVID.
Sbrana knows what it’s like to fight illness and never recover. That’s part of the reason she’s on the board of Political apparatus, a health justice organization that runs a support group for people with long-term COVID.
Sometimes, people join the group and ask, “How long do I have to live like this?” Sbrana doesn’t have that answer – nobody does – so instead, she tells them, “This could be a new normal for you and you need to figure out how to build a life. fullness with your body and brain right now.”
She admits that it can be difficult at first.
“On the other hand, you always need to keep the space open to hope that there might be a new treatment or protocol that improves your function.”
One thing that can be helpful is accommodations for people with disabilities.
“During this time, they most likely have a disability and will be eligible for accommodation at work or school,” says Sbrana.
But there are barriers to getting those disability benefits. Many longtime COVID patients never received a positive COVID test because they were in short supply at the start of the pandemic. Still others have difficulty proving they have long ago had COVID because their blood is clean and other tests look normal.
Jaime Seltzer, director of science and health outreach at #MEAction, advocating for people with ME/CFS.
She says there are lessons doctors and researchers can learn from people like her.
“People with chronic complex disease have had to live with the disease for decades,” says Seltzer. Researchers have been studying this for decades. “We definitely need to take the path that we’ve beaten in the past and start basing our hypothesis on what we’ve seen in these diseases with other labels.”
For some, the long COVID won’t go away any time soon, but hope remains.
Fisseha has spent the past 9 months dealing with each of her ailments, and lately, she’s been having more good days amid bad ailments. She’s no longer stuck in her third-floor walkway in Brooklyn. And she’s learned to appreciate the little victories along the way.
“I celebrate being able to get mail. I can even walk to the corner of my block and walk back,” says Fisseha. “Being able to walk for 10 minutes is a big deal for me.”
