In an initial report on long-term Covid-19, the UK’s National Institute for Health Research (NIHR) said a common topic among ongoing Covid patients – some of whom are seven months or more in their illness – is that symptoms are in occur in one physiological area, like the heart or lungs, only to wear off and then reappear in another area.
“This review highlights the adverse physical and psychological effects Covid is having on many people’s lives,” said Dr. Elaine Maxwell, who directed the report.
Many thousands of people around the world have networked on social media platforms and in online forums to share their experiences with persistent Covid-19 symptoms. Some call themselves “long haul drivers” while others have called their condition “long haul pilots”.
According to the UK-based patient group LongCovidSOS, data from a symptom tracker app developed by King’s College in London shows that 10 percent of Covid-19 patients remain unwell after three weeks and up to 5 percent can remain ill for months.
Maxwell, who presented the results of the “Living With Covid” report in an online media briefing, said health services are already struggling to “cope with these new and fluctuating patterns of symptoms and problems.”
She and her co-authors urged patients and doctors to log and track symptoms so that health researchers can learn more about the condition and get relief from it as soon as possible.
“Despite the uncertainties, people need help now,” she said. “We need to collect more data.”
For this first report, Maxwell’s team held a focus group with 14 members of a Facebook group called Long Covid.
Their statements suggest that Covid may continue to be cyclical, Maxwell said. Symptoms vary in severity and move around the body, including the airways, brain, cardiovascular system, and heart, kidneys, intestines, liver, and skin.
“There are powerful stories out there that people of all ages and backgrounds have persistent Covid symptoms,” the report said.
An urgent priority, Maxwell said, is to provide a work diagnosis that is recognized by health services, employers, and government agencies to help assist patients.
“While this is a new disease and we are learning more about its effects … services need to be better equipped to support people with ongoing Covid as newer evidence shows that there is significant psychological and social impact that will have long-term consequences. “Said the report.
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