Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study, 2024, Vernon +

https://link.springer.com/article/10.1007/s11606-024-09290-9

Abstract
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. How often people develop ME/CFS after SARS-CoV-2 infection is unknown.

Objective
To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study.

Design, Setting, and Participants
RECOVER-Adult is a longitudinal observational cohort study conducted across the U.S. We included participants who had a study visit at least 6 months after infection and had no pre-existing ME/CFS, grouped as (1) acute infected, enrolled within 30 days of infection or enrolled as uninfected who became infected (n=4515); (2) post-acute infected, enrolled greater than 30 days after infection (n=7270); and (3) uninfected (1439).

Measurements
Incidence rate and prevalence of post-COVID-19 ME/CFS based on the 2015 Institute of Medicine ME/CFS clinical diagnostic criteria.

Results
The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63–2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91–10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62–6.71). The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. Post-exertional malaise was the most common ME/CFS symptom in infected participants (24.0%, 2830 of 11,785). Most participants with post-COVID-19 ME/CFS also met RECOVER criteria for long COVID (88.7%, 471 of 531).

Limitations
The ME/CFS clinical diagnostic criteria uses self-reported symptoms. Symptoms can wax and wane.

Conclusion
ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. RECOVER provides an unprecedented opportunity to study post-COVID-19 ME/CFS.

 

COVID-19 Triggers ME/CFS
by Suzanne D. Vernon, PhD | Jan 10, 2025 | Long COVID, ME/CFS, Research News

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

The emergence of SARS-CoV-2, the virus responsible for COVID-19, swept across the globe with an unparalleled speed and severity. As a researcher dedicated to understanding how viral infections lead to chronic illness, I knew this pandemic would have far-reaching consequences. The history of post-viral illnesses strongly suggested that many survivors of COVID-19 would face prolonged and debilitating health challenges, with a substantial subset developing post-viral syndromes, including ME/CFS. This grim reality has become increasingly clear as the pandemic’s aftermath continues to unfold.

At Bateman Horne Center (BHC), we anticipated that COVID-19, like other viral outbreaks, would leave a legacy of chronic illness in its wake. Historical research on post-viral syndromes suggested that at least 10% of COVID-19 survivors would struggle with lingering health effects, including fatigue, cognitive impairment, and other disabling symptoms characteristic of ME/CFS. Sadly, this prediction has proven to be accurate—and urgent action is needed.

Through the National Institutes of Health’s RECOVER initiative, we had an unprecedented opportunity to study the long-term health impacts of COVID-19, including its role in triggering ME/CFS. As part of the RECOVER Mountain States PASC Consortium, a collaboration of researchers and healthcare systems across Utah, Colorado and New Mexico, BHC has contributed to groundbreaking research that sheds light on the intersection of COVID-19 and ME/CFS.

The RECOVER study, which has collected data from more than 15,000 adult participants over the past four years, provided us with an unprecedented opportunity to determine whether ME/CFS occurred after being sick with COVID-19 and the overlap between ME/CFS and Long COVID. In a paper published today in the Journal of General Internal Medicine, we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates. Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants. This prevalence is five times higher than pre-pandemic estimates and underscores the severe and lasting impact of COVID-19 on public health.

There has been a lot of discussion about whether ME/CFS and Long COVID are the same. RECOVER has helped us understand that ME/CFS is a subset, likely a severe subset, of the much larger Long COVID group.

Strikingly, 90% of these post-COVID-19 ME/CFS cases clustered with the most symptomatic and severe cases of Long COVID, highlighting the overlap between these two conditions. This finding reinforces what we at BHC have long known: ME/CFS is not only a real and diagnosable condition, but it is also a disabling disease that demands attention, especially in the wake of a global pandemic.

For healthcare providers, this research underscores an urgent call to action. The dramatic increase in ME/CFS cases post-COVID-19 means that providers will encounter this condition far more frequently. Early recognition and proper management of ME/CFS are not only possible but can be life-changing for patients. There are clinical diagnostic criteria recommended by the National Academy of Medicine that give providers the knowledge and tools they need to identify and manage, symptoms in both ME/CFS and Long COVID patients.

Bateman Horne Center is committed to changing this narrative. Through education, advocacy and collaboration, we aim to empower healthcare providers to recognize and address ME/CFS. Our mission is clear: to ensure that every patient facing this illness receives the care and support they deserve.

The COVID-19 pandemic has been a stark reminder of the complex and lasting impact that viral infections can have on human health. The rise in ME/CFS cases is a wake-up call for the medical community.

Now is the time to act, to educate, and to provide the compassionate care that can transform lives. Together, we can turn the tide for those living with ME/CFS and build a healthcare system that truly supports recovery.



Link: Journal of General Internal Medicine, “Incidence and Prevalence of Post‑COVID‑19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER‑Adult Study.

 

This seems to suggest that ~20% of the RECOVER cohort had PEM but did not meet ME/CFS criteria.

And that ~11% of the cohort have ME/CFS owing to COVID-19, yet don't have long covid...?

 

This is how PEM was assessed:

And ME/CFS was defined as:

 

Am I reading things correctly when "ME/CFS-like" would be anybody that has at least one of "moderate or severe fatigue", "PEM", "unrefreshing sleep", "OI" or a low "Neuro-QoL cognitive T-score"?

 

This description of PEM would include somebody feeling out of breath after walking up a flight of stairs due to asthma or lung damage due to acute Covid.

 

Yet another illustration of why language matters so much

 

And why a standardised PEM screening questionnaire that doesn’t just focus on fatigue (cough DSQ cough) would be really useful.

 

What the paper doesn't really discuss is that the rate of ME/CFS in the acute-infected - 73 of 4,515 (1.6%) - was much lower than in the post-acute infected - 458 of 7,270 (6.3%). The former was enrolled within 30 days of infection.

 

Made a Twitter summary with comments here:
https://twitter.com/user/status/1878877566515171819

https://bsky.app/profile/mecfsskeptic.bsky.social/post/3lfnfst3mev2u

1) The RECOVER study found that adults who got a SARS-CoV-2 infection were approximately 5 times as likely to develop ME/CFS.

But there are some important caveats…

2) The main one is that RECOVER used questionnaires to assess ME/CFS rather than a clinical examination as most diagnostic criteria require.

3) For example: pre-existing medical conditions that might cause ME/CFS-like symptoms were not excluded.

Most ME/CFS criteria have a long list of exclusionary conditions.

4) They way key symptoms were assessed is also quite problematic.

PEM was assessed by asking if patients had: ‘“post-exertional malaise (symptoms worse after even minor physical or mental effort)”

5) This is quite vague as it doesn’t define which symptoms get worse, how long after the effort, and if it caused additional functional impairment.

It was also a yes/no question, severity was not assessed.

6) Orthostatic intolerance was queried by asking if participants had the following: “Feeling faint, dizzy, ‘goofy’; difficulty thinking soon after standing up from a sitting or lying position”

7) I think this explains why some of the estimate of ME/CFS were quite high. The incidence rate of 2.66 per 100 person-years is more than 10x that of previous estimates.

8) In all the infected groups the prevalence of ME/CFS was 4.5% but there was a large difference between those enrolled < 30 days after infection where it was only 1.6% and those enrolled longer after infection where it was 6.3%.

 

Bit sad that they got more than 1 billion in funding and this is the best they could do...

 

The NIH have sent out a press release.

https://www.nih.gov/news-events/new...ds-cases-me/cfs-increase-following-sars-cov-2

News Releases

RECOVER(link is external)) Initiative suggest that infection with SARS-CoV-2, the virus that causes COVID-19, may be associated with an increase in the number of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases. According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus. RECOVER is NIH’s national program to understand, diagnose, prevent, and treat Long COVID.

The research team, led by Suzanne D. Vernon, Ph.D., from the Bateman Horne Center in Salt Lake City, examined adults participating in the RECOVER adult cohort study to see how many met the IOM clinical diagnostic criteria for ME/CFS(link is external) at least six months after their infection. Included in the analysis were 11,785 participants who had been infected by SARS-CoV-2 and 1,439 participants who had not been infected by the virus. Findings appear in the Journal of General Internal Medicine.

ME/CFS is a complex, serious, and chronic condition that often occurs following an infection. ME/CFS is characterized by new-onset fatigue that has persisted for at least six months and is accompanied by a reduction in pre-illness activities; post-exertional malaise, which is a worsening of symptoms following physical or mental activity; and unrefreshing sleep plus either cognitive impairment or orthostatic intolerance, which is dizziness when standing. People with Long COVID also experience some or all of these symptoms.

Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems. People with Long COVID report a variety of symptoms including fatigue, pain, and cognitive difficulties.

Dr. Vernon and her team determined that new incidence cases of ME/CFS were 15 times higher than pre-pandemic levels.

These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS.

Post-exertional malaise, orthostatic intolerance, and cognitive impairment were the most reported ME/CFS symptoms among participants in the infected group.

Limitations of this study include reliance on self-reported symptoms, exclusion of RECOVER participants who had been hospitalized, and the sporadic nature of ME/CFS symptoms.

More research is needed to understand the biological mechanisms of why some people are more likely to develop ME/CFS following infection than others. Advancing knowledge of how the SARS-CoV-2 virus can result in ME/CFS may help uncover potential treatments for a range of infection-associated chronic conditions.

The study was supported by the NIH (OT2HL161841, OT2HL161847, and OT2HL156812).

Who
Walter Koroshetz, M.D., director, NINDS, is available for interviews. To arrange an interview, please contact NINDSpressteam@ninds.nih.gov(link sends e-mail)

Article
SD Vernon et al., Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study(link is external), Journal of General Internal Medicine, 2025.

About the National Institute of Neurological Disorders and Stroke (NINDS): NINDS is the nation’s leading funder of research on the brain and nervous system. The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH…Turning Discovery Into Health®

 

So surely, they will atleast double their ME/CFS funding now, right …? (a man can dream)

 

I read it as requiring all of those, not just one.

 

Later in the text they write:

So that suggests that one ME/CFS symptom is enough to meet the ME/CFS-like definition.

What they call ME/CFS should have been named ME/CFS-like to be consistent with the literature. And what they named ME/CFS-like shouldn't have been named anything.

 

COVID-19 infection linked to increased cases of ME/CFS

COVID-19 infection linked to increased cases of ME/CFS

 

IFLScience People Who've Had COVID Could Be Almost 8 Times As Likely To Develop ME/CFS

quote:
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex chronic health condition that can sometimes be traced to a prior infection. Even if the initial infection was mild and the person made a full recovery, a debilitating array of symptoms can start to arise down the line.

If that sounds familiar in the context of COVID-19, that’s because there are a lot of parallels between ME/CFS and long COVID. While some patients with long COVID may have organ damage caused by the virus itself, or be dealing with the long-term effects of hospitalization, there are still others who recovered from a mild bout of COVID only to develop symptoms like brain fog, fatigue, and dizziness.

 

From the Solve ME/CFS Initiative:

A new RECOVER study published in the Journal of General Internal Medicine finds that cases of #MECFS increase following infection with SARS-CoV-2. Read our summary of the study co-authored by Solve CEO Emily Taylor here:
https://solvecfs.org/solve-ceo-emil...udy-on-risk-of-developing-me-cfs-after-covid/

 

A 2nd press release: COVID-19 Infection Associated With Nearly Eightfold Increase in Chronic Fatigue Syndrome https://www.newswise.com/articles/c...ightfold-increase-in-chronic-fatigue-syndrome

 

CIDRAP summary:

https://www.cidrap.umn.edu/covid-19...-have-condition-characterized-extreme-fatigue