One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus, 2023 Scheibenbogen et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Preprint. Now published see post #6

Abstract
Background: Infectious mononucleosis, caused by the Epstein-Barr Virus (EBV-IM), has been linked to the development of myalgic encephalomyelitis/chronic fatigue-syndrome (ME/CFS) in children, adolescents, and young adults. Our study presents the first cohort of young individuals in Germany who were diagnosed with ME/CFS following EBV-IM.

Methods: We conducted a one-year follow-up of 25 young people diagnosed with ME/CFS at our specialized tertiary outpatient service by clinical criteria requiring post-exertional malaise and with documented EBV-IM as the triggering event. Demographic information, laboratory findings, frequency and severity of symptoms, physical functioning, and health-related quality of life (HRQoL) were assessed at first visit as well as 6 and 12 months later at follow-up visits.

Results: The physical functioning and HRQoL of the cohort were significantly impaired, with young adults displaying more severe symptoms, as well as worsening of fatigue, physical and mental functioning, and HRQoL throughout the study, compared to adolescents. After one year, we found that 6/12 (54%) adolescents no longer met the diagnostic criteria for ME/CFS, indicating partial remission, while all young adults continued to fulfill the Canadian consensus criteria. Improvement in children was evident in physical functioning, symptom frequency and severity, and HRQoL, while young adults had little improvement. EBV serology and EBV DNA load did not correlate with distinct clinical features of ME/CFS, and clinical chemistry showed no evidence of inflammation. Remarkably, the median time from symptom onset to ME/CFS diagnosis was 13.8 (IQR: 9.1-34.9) months.

Conclusions: ME/CFS following EBV-IM in young people is a severely debilitating disease with diagnoses protracted longer than one year in many patients and only limited responses to conventional symptom-oriented medical care. Although younger children may have a better prognosis, their condition can fluctuate and significantly impact their HRQoL. Our data emphasize that biomarkers and effective therapeutic options are also urgently needed for this very young age group to better manage their medical condition and pave the way to recovery.

https://www.medrxiv.org/content/10.1101/2023.07.24.23293082v1
 
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"ME/CFS is diagnosed according to clinical criteria and after exclusion of other diseases that might explain the symptoms [48]. In adults the systemic exertion intolerance disease (SEID)/Institute of Medicine (IOM) criteria [49] are recommended for screening and the Canadian Consensus Criteria 123 (CCC) [50] for diagnosis and research. For children and adolescents the CCC were adapted in a “pediatric case definition” (here abbreviated as PCD-J) by Jason and colleagues [51] and modified in a “clinical diagnostic worksheet” (here abbreviated as CDW-R) developed by Rowe and colleagues who thereby referred to less typical pediatric cases [6]. All four scores require PEM as an essential criterion."
 
Some quotes from the paper:

"At the initial visit, all adult patients met the CCC and all pediatric patients met the CDW-R and/or 404 CCC criteria as was required for ME/CFS diagnosis in this study. However, due to the absence of 405 pain (n=3) or neurocognitive manifestations (n=1), 4/12 (33%) of the adolescents did not fulfill the 406 CCC, supporting the use of more sensitive diagnostic criteria for pediatric patients."

"Most remarkably, the majority of our adolescent patients did not fulfill the criteria for ME/CFS diagnosis any more at 12 months after the first visit, while all adult patients still met the CCC. The different health trajectories for adolescent and adult patients were also evident in the self-perceived health transition item of the SF519 36 at 12 months after the first visit, with 40% and 20% of children rating their general health as much better or somewhat better, and 45% and 22% of adults much worse or somewhat worse than in the previous year, respectively"​
 
ME/CFS Skeptic said:
Some quotes from the paper:

"At the initial visit, all adult patients met the CCC and all pediatric patients met the CDW-R and/or 404 CCC criteria as was required for ME/CFS diagnosis in this study. However, due to the absence of 405 pain (n=3) or neurocognitive manifestations (n=1), 4/12 (33%) of the adolescents did not fulfill the 406 CCC, supporting the use of more sensitive diagnostic criteria for pediatric patients."
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Actually, this is what the CCC says about the absence of pain: "*There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset."

http://www.meresearch.org.uk/wp-content/uploads/2012/11/2003-Carruthers-Canadian-Definition-JCFS.pdf
 
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Wyva said:
Actually, this is what the CCC says about the absence of pain: "*There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset."

http://www.meresearch.org.uk/wp-content/uploads/2012/11/2003-Carruthers-Canadian-Definition-JCFS.pdf
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Huh. I have very little pain, and my sleep dysfunction is usually PEM related. I did not have a clear infectious illness onset (I became gradually ill for seemingly no reason, but who knows if there was a mild or asymptomatic illness weeks/months before I started to notice PEM for real).
 
One-year follow-up of young people with ME/CFS following infectious mononucleosis by Epstein-Barr virus

Background: Infectious mononucleosis after primary infection with Epstein-Barr virus (EBV-IM) has been linked to the development of myalgic encephalomyelitis/chronic fatigue-syndrome (ME/CFS) in children, adolescents, and young adults. Here, we present clinical phenotypes and follow-up data from a first German cohort of young people with ME/CFS following EBV-IM.

Methods: 12 adolescents and 13 young adults were diagnosed with IM-triggered ME/CFS at our specialized tertiary outpatient service by clinical criteria requiring post-exertional malaise (PEM) and a history of confirmed EBV primary infection as triggering event. Demographic information, laboratory findings, frequency and severity of symptoms, physical functioning, and health-related quality of life (HRQoL) were assessed and re-evaluated 6 and 12 months later.

Results: Young adults displayed more severe symptoms as well as worsening of fatigue, physical and mental functioning, and HRQoL throughout the study, compared to adolescents. After one year, 6/12 (54%) adolescents no longer met the diagnostic criteria for ME/CFS while all young adults continued to fulfill the Canadian consensus criteria. Improvement in adolescents was evident in physical functioning, symptom frequency and severity, and HRQoL, while young adults showed little improvement. EBV serology and EBV DNA load did not correlate with distinct clinical features of ME/CFS, and clinical chemistry showed no evidence of inflammation. Remarkably, the median time from symptom onset to ME/CFS diagnosis was 13.8 (IQR: 9.1–34.9) months.

Conclusions: ME/CFS following EBV-IM is a severely debilitating disease often diagnosed late and with limited responses to conventional medical care, especially in adults. Although adolescents may have a better prognosis, their condition can fluctuate and significantly impact their HRQoL. Our data emphasize that biomarkers and effective therapeutic options are also urgently needed to improve medical care and pave the way to recovery.

https://www.frontiersin.org/article...ournalName=Frontiers_in_Pediatrics&id=1266738
 
Only one of our patients had previously received a certificate of disability and none was supported by adequate medical devices or home care, reflecting poor medical care and barriers to specialized support (64–66). The large number of medical consultations prior to diagnosis, large proportion of our patients taking various dietary supplements and/or receiving complementary medical treatment, reflects the known lack of adequate, standard medical care and sets families at risk of financial challenges (7, 84).

All pupils in our study reported frequent school absences, and, remarkably, only a minority had received any educational assistance such as home or digital schooling. These findings align with earlier studies showing prolonged school absences and severely reduced social participation and education of young ME/CFS patients (3–8). This is particularly concerning, since pediatric patients with ME/CFS reported that remaining engaged in an education system that flexibly accommodated their illness and aspirations was crucial for their long-term functioning (7, 85, 86).
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