A study following Kaiser Permanente Northern California patients with chronic fatigue-like symptoms in 2022 estimated that 14% of them developed symptoms after having COVID-19.
The study, published in the “PLOS ONE” journal, explored the relationship between COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating condition that can include extreme fatigue, post-exertional malaise, sleep issues, and brain fog or dizziness. ME/CFS is the current term for an illness known in the past as chronic fatigue syndrome.
All the patients with this condition had major impairment in physical, mental, emotional, social, and occupational functioning compared with patients without the illness.
“It’s hard to over-estimate the dramatic impact this illness has on their lives,” said senior author Jacek Skarbinski, MD, a research scientist with the Kaiser Permanente Division of Research and infectious diseases physician with The Permanente Medical Group.
The researchers were interested in learning whether COVID-19 may have caused some cases of this syndrome. Their results suggest it may have played a role, but more research is needed to get a complete picture.
“Our results offer a snapshot in time,” Dr. Skarbinski said. “We can’t yet say whether COVID added to the overall incidence of ME/CFS. We expect to know more in the next stages of our study.”
The researchers surveyed 9,825 patients about their symptoms and their COVID-19 history.
“We cast a wide net to find people who might have symptoms that fit the definition of ME/CFS but had not been diagnosed,” said lead author Mariah S. Wood, a data analyst with the Division of Research.
Overall, the researchers estimated that 1.7%, or 45,892, of 2.7 million adult Kaiser Permanente Northern California members had ME/CFS-like syndrome during the study period, July to October 2022. Of those, 14% developed the illness after COVID-19.
The patients with the syndrome began after COVID-19 were more likely to be unvaccinated against COVID-19 and to have had COVID-19 before June 2021.
Those whose symptoms began after COVID-19 were more likely to have better physical functioning but greater anxiety and less energy than those with this condition whose symptoms were not associated with COVID-19.
Other research has suggested there also could be overlap between patients with ME/CFS and those reporting long COVID, a condition involving COVID-19 symptoms that persist over a long period.
Dr. Skarbinski said this study could shed light on questions of COVID-19’s role and any relationship between ME/CFS and long COVID, as researchers continue to survey the patients over time.
Comments (3)
I am pleased to see Kaiser’s recent evolution toward providing services for patients with ME/CFS and Long Covid. As well as your contributions to research and collaborations with NIH.
There is always opportunity to do more. Kaiser is well-positioned to innovate and lead where public health has failed. Patients with ME, LC and other infection-associated chronic conditions still struggle for care. Energy limitations complicate access. Given the nature of these multi-system diseases, patients need access to a multi-disciplinary care team with extensive training in the unique aspects of the disease, palliative support and especially root-cause treatments.
As the science continues to evolve. I hope as well that Kaiser can lead in terms of developing therapies and offering off-label drugs shown in recent research to be helpful. Another area where Kaiser could contribute to patient health is to provide its patients with access to study participation, whether it is led by Kaiser directly, or in partnership with existing clinics at institutions such as Stanford, UCSF.
Sincerely,
Laura Bone
I am one of these patients experiencing chronic fatigue & long COVID. I have not been the same since I had COVID in October 2023.
Thank you for sharing this. I’ve experienced the same, plus brain fog, difficulty finding the right words to express myself when talking, etc. Sad that the medical community took FOUR YEARS! to validate what patients like me were experiencing! This lack of validation affected how some members of my family refused to understand this connection is totally valid. I had severe COVID March-May of 2020, and my concerns about having chronic fatigue syndrome as a result, fell on deaf ears. Even as recently as March 2024, I’ve been met with a “wait and see” approach! How sick do we have to become for doctors to believe us?! So frustrating.