Outcomes of ME/CFS Following Infectious Mononucleosis: Seven-year Follow-up of a Prospective Study, 2026, Jason et al

forestglip

forestglip

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Outcomes of ME/CFS Following Infectious Mononucleosis: Seven-year Follow-up of a Prospective Study

Leonard A. Jason, Jacob Furst, Rebecca Worth, Ben Katz

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Background
Many individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) report experiencing an infectious illness prior to disease onset. Approximately 30% of cases are linked to Epstein–Barr virus (EBV) infection resulting in Infectious Mononucleosis (IM).

Methods
We examined the progression of ME/CFS following IM among a cohort of college students who were recruited before they developed the infection. This sample represented a socioeconomically and ethnically diverse population of young adults who were monitored over a 7-year period.

Assessments of health status, psychological functioning, and blood biomarkers were conducted at four time points: (1) baseline, when participants were healthy and at least six weeks from IM onset; (2) within six weeks of IM diagnosis; (3) six months post-IM, when participants had either recovered or met criteria for ME/CFS; and (4) the 7-year follow-up.

Results
At follow-up, 81% of participants who had initially presented with severe ME/CFS continued to fulfill diagnostic criteria. In contrast, only about one-third of those with moderate or lingering symptoms at six months still had ME/CFS seven years later.

Conclusions
These findings indicate that ME/CFS following IM tends to persist over the long term, particularly among those whose illness was more severe at onset.

Web | Frontiers in Medicine | Abstract only ahead of publication
 
Trish said:
I recall from previous work by this team they had an odd way of defining severe, as being those with PEM. It would be worth checking their previous publications on this study before drawing any conclusions from the abstract.
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Yes, they did indeed. In Jason et al. 2022, they defined severe as fulfilling more than one set of criteria:
Therefore, participants who primarily only met the Fukuda et al.8 criteria were defined as having ME/CFS. Those who met more than one case definition (i.e., the Fukuda and either the Canadian and/or Institute of Medicine criteria) were defined as having severe ME/CFS. Those who met more than one case definition also scored worse on the DSQ than those who met only a single case definition for ME/CFS six months following IM.
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While I understand that this was a neat way of differentiating two groups of patients in their papers, I think it is very unhelpful for the field to have researchers using "severe ME/CFS" to mean something completely different from what it has meant in the field for decades.

There will be plenty with mild and moderate ME/CFS who fulfill both Fukuda and the Canadian +/- IOM criteria.

People with severe (meaning completely housebound, usually bed-based) and very severe (meaning bedbound) ME/CFS need the severity of their condition to be understood by health professionals.
 
forestglip said:
Outcomes of ME/CFS Following Infectious Mononucleosis: Seven-year Follow-up of a Prospective Study
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But it is wonderful to have Jason's team doing (a) prospective studies and (b) long term follow-ups. I hope they keep following them up, again and again. We could learn a lot.

This is very useful information (square brackets contain my understanding of the categories, will amend if incorrect when full paper available):
forestglip said:
At follow-up, 81% of participants who had initially presented with [Fukuda + CCC/IOM] ME/CFS continued to fulfill diagnostic criteria. In contrast, only about one-third of those with moderate or lingering symptoms [Fukuda only] at six months still had ME/CFS seven years later.
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Long-term studies before have found that many people live in a middle ground, not as well as healthy people
e.g.

Understanding long-term outcomes of chronic fatigue syndrome​

Molly M Brown et al. J Clin Psychol. 2012 Sep.
Show details



Abstract​

Objective: This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.

Method: Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.

Results: Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls. On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.

Conclusions: Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.
 
Agree that the terminology used is a bit unfortunate, but lets see what the data says. The abstract seems to suggest that things look different than in One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus, 2023 Scheibenbogen et al, so let's see if that holds up and how large the sample size is. I suspect that the strength of the study is probably it's setup and very long-term follow-up, there's a decent chance that one might be able to tell from how many people end up with a diagnosis at 6 months, whether the sample and diagnosis is somewhat representative or not.
 
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EndME said:
lets see what the data says
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Agree, looking forward to seeing it. Jason et al. 2022's sample at 6 months was "30 were classified as ME/CFS [Fukuda] and 18 were classified as severe ME/CFS [Fukuda + CCC/IOM]". So it will be a bigger sample and its prospective nature means it should be more representative. (Right?)

That link just went to this thread for me.
 
Evergreen said:
That link just went to this thread for me.
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My mistake. I edited the post, should be correct now.

Evergreen said:
So it will be a bigger sample and its prospective nature means it should be more representative. (Right?)
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I think one would hope so, but if it say turns out they have a ME/CFS rate of above 20% at 6 six months in this IF cohort, then it probably would suggest that things aren't very representative. If one considers their previous study to mean 238 cases of IM lead to 48 cases of ME/CFS than that reads too high for me (somewhere around 20% of people with IF in this cohort develop ME/CFS), but I think one should probably focus on the CCC/IOM data and in their previous study that seemed much more in accordance with what other studies report.
 
EndME said:
I think one would hope so, but if it say turns out they have a ME/CFS rate of above 20% at 6 six months in this IF cohort, then it probably would suggest that things aren't very representative. If one considers their previous study to mean 238 cases of IM lead to 48 cases of ME/CFS than that reads too high for me (somewhere around 20% of people with IF in this cohort develop ME/CFS), but I think one should probably focus on the CCC/IOM data and in their previous study that seemed much more in accordance with what other studies report.
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I'm working from memory, which is never a good idea for me. But I'm fairly sure that the 2022 study captured severity measures, so if they wanted to define severe ME/CFS , they had better ways of doing it. I'm sure this was discussed at length on the thread for the original paper
 
Simon M said:
I'm working from memory, which is never a good idea for me. But I'm fairly sure that the 2022 study captured severity measures, so if they wanted to define severe ME/CFS , they had better ways of doing it. I'm sure this was discussed at length on the thread for the original paper
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Yes, the terminology seems bizarre, but the terminology does not effect the actual data, even it might not necessarily reflect well back on the authors which of course is never a good first sign. Especially since they've now persisted with this terminology.

There's perhaps the idea that what they call "severe-ME/CFS" would represent what we would call ME/CFS and the other is more akin to post-viral fatigue but I'm not even sure about that (for example Fukuda can also include for example people with MS or depression and of course those disease are also not mild as the authors would say).
 
But if we all experience severe delayed PEM, than how do we measure 'severe ME'? Some pwME have a predispositions to comorbidities.
 
Mij said:
But if we all experience severe delayed PEM, than how do we measure 'severe ME'? Some pwME have a predispositions to comorbidities.
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Severe ME seems to be more a reflection of degree of impairment than of symptoms.

A person who experiences severe delayed PEM mainly when sitting up in bed very likely has severe ME.

A person who experiences severe delayed PEM mainly when biking to work very likely doesn’t.
 
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