This is pretty good news. Unfortunately no details like staffing or funding that would allow us to estimate how much research they'll be undertaking. Regardless, it's part of a trend of increasing awareness of ME/CFS, long Covid, and similar.
A large focus of the center is also the development of vaccines, which is Iwasaki's speciality. Whilst an interesting, extremely important and of course life saving field of study,
On January 5, 2023, Anna (a pseudonym to protect her family’s privacy) got up early in the morning, took her mom’s car, and drove to a local state park where she ended her life. She was 40 years old and a mother of two children, ages 3 and 6.
Anna had suffered from Long COVID after contracting COVID-19 in January 2022, which manifested to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) two months later. ME/CFS is a disabling, chronic condition that affects the nervous and immune systems. Often called an invisible disease, ME/CFS is frequently misunderstood and not taken seriously by health care providers and the public.
Anna was confined to her bed due to her extreme exhaustion, pains, and tremors from ME/CFS. As her disease progressed, she could barely move, lost her ability to speak, and could not tolerate light or sound. Her pervasive brain fog made it difficult to think. ME/CFS crippled her mentally and emotionally. “Anna went from being hopeful, to somewhat hopeful, to despair and sadness,” recalls her mother.
During Anna’s last two months, signs were posted on her bedroom walls to communicate her needs: “Water,” “Food,” “Too Cold,” “Too Hot,” and “No Energy to Do That.” The only times that she could see her children were when her husband would ask them to say good morning to her. Health care professionals from whom she sought treatment dismissed her symptoms. Her mother came to the following conclusion about the medical community’s attitude toward Anna’s condition: “Since the disease is not quantitative, we can’t measure it. If we can’t test for it, then we can’t cure it.”
Anna lost her independence when she had to rely on family members to provide her with 24/7 care. “Anna didn’t want to go through life being an emotional, physical, and financial burden on our family,” says her mother.
The suicide rate among ME/CFS patients has grown at an alarming rate. According to research in Britain and Spain, people suffering from ME/CFS are six times more likely to die by suicide than the general population. In sharing Anna’s story, her mother hopes that research can someday discover a cure for ME/CFS
Earlier this year, philanthropist Emily Fairbairn awarded $2 million to Yale School of Medicine to fund the research of Akiko Iwasaki, PhD, Sterling Professor of Immunobiology and professor of dermatology, of molecular, cellular & developmental biology, and of epidemiology (infectious diseases), on Long COVID and chronic Lyme disease, and Carol Sirot gifted $1 million to the school to help Iwasaki discover a biomarker for ME/CFS.
Her deep appreciation of the regulation of the human immune system has allowed her to lead the way in delineating the mechanisms of how it reacts to COVID-19, and the consequences of Long COVID. Her expertise in innate immunity—or how the immune system first reacts to pathogens—is providing key insights into Long COVID, validating patient experiences and informing treatment strategies.