SALT LAKE CITY — A new study showed some insight into what patients suffering from long COVID-19 are experiencing.
The study asked participants suffering from long COVID-19 from 56 different countries more than 250 questions.
“Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive symptoms), have not returned to previous levels of work, and continue to experience significant symptom burden,” the study stated.
More than 45 percent of participants suffering from long COVID-19, said they had to move to a reduced work scheduled, while about 22 percent weren’t working at all because of the illness.
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Several patients at University of Utah Health’s new Post-COVID-19 clinic are experiencing similar struggles when it comes to work.
“Similar to our patient population, we are seeing a lot of post-exertional malaise, which means if you work physically or mentally at anything sort of taxing, they will have a lot of fatigue and feel poorly after that for usually anywhere from hours to days and sometimes weeks,” said Dr. Jeanette Brown, the medical director for the Post COVID-19 Clinic.
“Some have had to take time off and then have gone back to work, some are not working, so there is a wide variety of patterns that we are seeing,” she said.
Janet Trevino is suffering from long COVID-19 and has had to make the difficult decision to stop working.
“Having to step away from that is really difficult because at times I felt like a failure,” she said through tears.
For years, Trevino worked in senior care, but it has become impossible with her long COVID-19 symptoms. It came down to having to choose her health, she said.
“I have to be around for my husband, my kids and my family,” Trevino said.
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Every day is different, and the list of symptoms is extremely long, but some are more debilitating than others, Trevino said.
“The brain fog, the fatigue, the headaches and the inability to really eat,” she said.
There is still so much unknown with long COVID-19, Dr. Brown said.
“Whether people will be disabled in the long term is kind of the big question still left,” she said.
Not being able to work has been a major financial strain, Trevino admitted.
“Honestly, we’ve even had to sell a few things to be able to pay bills,” she said.
There is not enough assistance out there, Trevino said. Trevino has been denied for several assistance programs, she said.
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“Many people including myself, are fighting the disability to get that assistance,” she said.
Hopefully, things will quickly change, as more people demand assistance who are suffering from long COVID, Trevino said.
“Very frustrating to not have that support,” she said.
If you live in Utah and are suffering from long COVID-19, you can join the long haulers support group here.