The World Health Organisation has an article on some patient led research aimed at understanding and developing treatments for Long Covid.
“It’s time for action. We have a lot of work ahead of us.”
Understanding the complexity of long COVID
Based on background research into ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome – a serious, long-term illness that affects many body systems), the Erasmus team hypothesized that persistent post COVID-19 symptoms may be due to immune disruption triggered by viral infection. Putting this hypothesis to the test, they compared the changes in the immune system of study participants who had had COVID-19 which led to persistent fatigue 6 months after hospital discharge, with those who did not develop this ongoing fatigue. This has revealed some interesting differences, which the research team are now investigating further.
“We found a wide variety of immune abnormalities, with differing immune-profiles in different patients. There are different sorts of immune disruption and what we cannot yet determine is how these findings in the immune system relate to symptoms. What we do see, however, is probable targets for therapy and that this should be tailored to the patients.”
The Erasmus team have taken physical function measurements, such as walking ability and hand-grip strength that can point to improvements in a patient’s physical recovery over time and can help identify those who need rehabilitation. However, cognitive measurements, and investigation into quality of life, return to work, stress, depression and anxiety symptoms reveal considerable, long-lasting impacts.
The Erasmus team is also coordinating the CO-FLOW study involving patients from 8 other regional hospitals and rehabilitation sites in the Netherlands. Due to the high prevalence of these residual symptoms in the 650 people enrolled in the study, the team plan to extend their research for a further period to better understand these impacts in the longer-term.
Angelique Hasselbaink is one of those enrolled in the study. She was hospitalized with COVID-19 and has returned to the centre 4 times to participate in tests. Like most participants, she is keen to contribute to the understanding of long COVID. “The people in the hospital, the medical staff, they were there for me. So I think it’s my obligation to give back to the public. To help.”
Another participant is Justine Pelmelay, a singer who has previously represented the Netherlands in the Eurovision Song Contest. She was hospitalized with COVID-19 in 2020 and has experienced a big impact on her subsequent health: “The first time after COVID I had to perform I was crying on stage because my condition was terrible”. Her motivation to enrol was also to help others, so they will not have to go through what she did.