Could COVID-19 harm patients after the infection has gone? Members of the EUROMENE COST Action are adapting their work on chronic fatigue syndrome to coronavirus patients.
They plan to study the risk of follow-on extreme tiredness, to predict long-term health, social and economic impacts.
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), still puzzles scientists and doctors.
To share information and insights, researchers from 21 countries created Europe's first CFS network, the COST Action 'European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome' (EUROMENE).
The network has identified indicators, such as biomarkers, of forms of the syndrome with different causes, developed an overview of potential treatments, and drawn up guidelines on how to diagnose and treat chronic fatigue, published on the Action website.
Participants are now looking for funding to investigate a possible new cause of ME/CFS - COVID-19. This is possible thanks to COST, acknowledges EUROMENE member Dr. José Alegre-Martin, a senior ME/CFS specialist at the Vall d'Hebron University Hospital in Barcelona, Spain.
"This project requires a network and human resources, which EUROMENE makes viable."
The proposed work could help healthcare providers and governments plan for coronavirus consequences. "ME, or CFS, has been called post-viral fatigue syndrome," Alegre-Martin explains.
According to the Action, up to 4 in 1 000 people worldwide already have ME/CFS. In 2015 alone, it cost the European economy EUR 32 million. COVID-19 could add to this burden, says Alegre-Martin.
Due to the impact the coronavirus is having in the world, it is very important to design a protocol to detect related fatigue."
Dr. José Alegre-Martin, Senior ME/CFS Specialist, Vall d'Hebron University Hospital in Barcelona, Spain
Scientists plan to use networks, knowledge, and homogenized data generated in EUROMENE to identify the symptoms and markers of possible COVID-19-caused ME/CFS.
Diving deeper, they will examine how reactions in the body's cells and molecules could lead to a new form of the syndrome and suggest research for early diagnosis and even treatment.
In particular, researchers want to find out whether COVID-19 infection worsens fatigue in existing ME/CFS patients and whether other survivors of the virus might go on to develop the syndrome.
Powerful computers will hunt through COVID-19 patient databases as well as medical clues from ME/CFS patients and healthy volunteers, accessed partly through EUROMENE contacts.
Finally, scientists plan to study how this possible new form of chronic fatigue could add to the existing economic fallout from the new virus. "How does it limit patients' ability to work?" asks Alegre-Martin.
Even so, there is a scientific opportunity in COVID-19, which adds another EUROMENE participant, Professor Jerôme Authier of Paris Est-Creteil University in France.
"We know the start date of this disease. It can be a model for understanding coronavirus-caused CFS."
And although the COST Action ended in April 2020, it has already had a major impact on chronic fatigue research. "EUROMENE marks a before and after in multidisciplinary and multi-center work on chronic fatigue syndrome," says Alegre-Martin.
"It has been one of the most gratifying experiences in my professional life."