ME/CFS epidemiology - early recovery (recovery in the first two years after onset)

Hutan

Hutan

Moderator
Staff member
I've seen some skepticism about the idea that there is a high rate of recovery from ME/CFS in the first two years. I think it happens and it's important to acknowledge that it does, because, if we don't, the people who do recover will think that they are special, that whatever treatment they were trying at the time is special.

We only have to think about Garner as an example of where it's likely that natural recovery has been assumed to instead signify moral strength to look down the barrel of the long Covid gun, or something.

So, maybe we can collect evidence on recovery rates and improvement and see where we end up.

I think the scope for the data collection should include ME/CFS-like Long Covid. Because ME/CFS is arbitrarily defined as starting at around 6 months after onset of ME/CFS-like symptoms, the time period I'm interested in is between 6 months and 2 years after onset.
 
Last edited:
Recovery of neurophysiological measures in Post-covid fatigue - a 12 month longitudinal follow up study, 2024, Maffitt et al

RESULTS
Baseline (Visit 1) was 6 to 26 weeks after infection.
Visit 2 was 6 months later
Visit 3 was 6 months after that (so roughly, one year to a year and a half after infection).

Excerpts:
Fatigue Impact
There was a significant (p < 0.0001, F = 13.3) decrease in the self-reported perception of the impact of fatigue across visits; mean FIS score declined from 80.3 at V1 to 60.2 at V2 and 46.1 at V3 (Fig. 1B).... Overall, the majority (16/18) of participants had improved FIS scores between V1 and V3.
Click to expand...
Click to expand...
As a group the reported impact of fatigue decreased, and our metrics returned to or were returning to normal.
Click to expand...
It's interesting that there was some speculation about long term damage, with a followup study that is worth a look.
There is a follow-up to this study: Evidence of Accumulating Neurophysiologic Dysfunction in Persistent Post-COVID Fatigue (2025, Germann et al, Preprint)
Click to expand...
 
Last edited:
There are some iconic prospective studies, for example the Dubbo study which looked at what they called post-infective fatigue syndrome following infections of EBV, Ross River Fever and Q fever
thread here

Incidence of post-infective fatigue syndrome​

The case rate for provisional post-infective fatigue syndrome was 35% (87/250) at six weeks, 27% (67/250) at three months, 12% (29/250) at six months, and 9% (22/250) at 12 months. No difference in these case rates existed between the initial infective agents (fig 1).
Click to expand...
 
Long COVID trajectories in the prospectively followed RECOVER-Adult US cohort (2025)

identify distinct longitudinal profiles based on a Long COVID research index measured 3 to 15 months after infection. Eight longitudinal profiles were identified.
Click to expand...

Profile C (n = 379, 10%) described participants whose LCRI decreased over time (“improving, moderate symptom burden”).
Click to expand...

Profile D (n = 334, 9%) described participants whose LCRI was on average lower than profile C at 3 months and decreased, mostly to 0, by 6 months (“improving, low symptom burden”).
Click to expand...

Among the 10% of participants who met research index criteria for Long COVID at 3 months, 46% were in the persistent Long COVID group, 35% continued to have intermittent Long COVID-related symptoms, and 19% were in the group that was improving over time.
Click to expand...
 
I can think of 2 German studies:
One-Year Follow-up of Young People with ME/CFS Following Infectious Mononucleosis by Epstein-Barr Virus, 2023 Scheibenbogen et al
Long-term symptom severity and clinical biomarkers in post-COVID-19/[CFS]: results from a prospective observational cohort, 2023, Legler+
Both studies suggest a high (or at least higher than some others suggest) recovery rate.

See also the following thread: Looking for references on resolution of long COVID in year one and beyond

The NIH intramural study only had a very small sample size but on the positive side it is probably the most rigorously selected cohort we've seen in any study to date and will certainly be more rigorously selected than any epidemological cohorts. There it is reported "Within four years of participation, four of the 17 PI-ME/CFS participants had a spontaneous full recovery". I think that is already quite substantial evidence that individual recovery stories can't be given the prominence they are often given even if the study is underpowered to give you exact rates.
 
Katz BZ, Shiraishi Y, Mears CJ, Binns HJ, Taylor R. Chronic fatigue syndrome after infectious mononucleosis in adolescents. Pediatrics. 2009 Jul;124(1):189-93. doi: 10.1542/peds.2008-1879. PMID: 19564299; PMCID: PMC2756827.

Abstract​

Objective: The goal was to characterize prospectively the course and outcome of chronic fatigue syndrome in adolescents during a 2-year period after infectious mononucleosis.

Methods: A total of 301 adolescents (12-18 years of age) with infectious mononucleosis were identified and screened for nonrecovery 6 months after infectious mononucleosis by using a telephone screening interview. Nonrecovered adolescents underwent a medical evaluation, with follow-up screening 12 and 24 months after infectious mononucleosis. After blind review, final diagnoses of chronic fatigue syndrome at 6, 12, and 24 months were made by using established pediatric criteria.

Results: Six, 12, and 24 months after infectious mononucleosis, 13%, 7%, and 4% of adolescents, respectively, met the criteria for chronic fatigue syndrome. Most individuals recovered with time; only 2 adolescents with chronic fatigue syndrome at 24 months seemed to have recovered or had an explanation for chronic fatigue at 12 months but then were reclassified as having chronic fatigue syndrome at 24 months. All 13 adolescents with chronic fatigue syndrome 24 months after infectious mononucleosis were female and, on average, they reported greater fatigue severity at 12 months. Reported use of steroid therapy during the acute phase of infectious mononucleosis did not increase the risk of developing chronic fatigue syndrome.

Conclusions: Infectious mononucleosis may be a risk factor for chronic fatigue syndrome in adolescents. Female gender and greater fatigue severity, but not reported steroid use during the acute illness, were associated with the development of chronic fatigue syndrome in adolescents. Additional research is needed to determine other predictors of persistent fatigue after infectious mononucleosis.
 
Hutan said:
I've seen some skepticism about the idea that there is a high rate of recovery from ME/CFS in the first two years. I think it happens and it's important to acknowledge that it does, because, if we don't, the people who do recover will think that they are special, that whatever treatment they were trying at the time is special.

We only have to think about Garner as an example of where it's likely that natural recovery has been assumed to instead signify moral strength to look down the barrel of the long Covid gun, or something.

So, maybe we can collect evidence on recovery rates and improvement and see where we end up.

I think the scope for the data collection should include ME/CFS-like Long Covid. Because ME/CFS is arbitrarily defined as starting at around 6 months after onset of ME/CFS-like symptoms, the time period I'm interested in is between 6 months and 2 years after onset.
Click to expand...
I have been in a long covid group from 2021 onwards and a huge proportion of people improved within the first couple years, many to remission level and left the group. The ones who didn't are still pretty much where they were or worse.
 
V.R.T. said:
I have been in a long covid group from 2021 onwards and a huge proportion of people improved within the first couple years, many to remission level and left the group. The ones who didn't are still pretty much where they were or worse.
Click to expand...

Same & also noticed that. The % recovering definitely petered out after the first couple of years. Occasionally still happened in year 3 or 4 but seemed a lot less / rare.
 
I used to get local monthly ME/CFS newsletters in the 90s before the internet and there were several stories of recovery from taking supplements and doing Qi gong, one recovered microbiologist started sending us lists of supplements to take. Then there was Dr. Jacob Teitelbaum's "nationally known CFS expert" recovery and book . . .
 
V.R.T. said:
I have been in a long covid group from 2021 onwards and a huge proportion of people improved within the first couple years, many to remission level and left the group. The ones who didn't are still pretty much where they were or worse.
Click to expand...
Theres also a lot who had the sort of

Trigger -> Severe -> Moderate -> Mild -> Very Mild

course

while you hear a lot of people who are severe long term paradoxically have a sort of

Trigger -> Moderate -> Mild -> Big Crash to Severe

(this is purely anecdotal)
 
It seems like a difficult topic to research, due to the lack of a reliable clinical test for ME. Did the recovered subjects really have ME, or did they have some somewhat similar symptoms due to some other cause? I can imagine two research groups doing the same study, accessing the same data, and coming up with completely different conclusions from different filtering.
 
Creekside said:
It seems like a difficult topic to research, due to the lack of a reliable clinical test for ME. Did the recovered subjects really have ME, or did they have some somewhat similar symptoms due to some other cause? I can imagine two research groups doing the same study, accessing the same data, and coming up with completely different conclusions from different filtering.
Click to expand...
Does it really matter if they had ME/CFS or not?

To me the relevant question is if they looked like ME/CFS cases. So how many people look like they have ME/CFS 3, 6, 12, 24, 36+ months after the onset?

I think there is an exponential decline over the first couple of years. And then a lot fewer recover.
 
If they have certain symptoms for a certain period of time and all reasonable tests to rule out an alternative diagnosis have been conducted they have ME/CFS by definition.

There will always be some borderline cases where one might question whether a diagnosis of ME/CFS is actually useful (for example a case of self-resolving post-viral illness with a slow recovery but continous upwards trajectory but where some symptoms are still present at 6 months) and many won't have had all reasonable tests and all of that will influence some of the results of the above studies but if anything I think that probably just proves @Hutan 's point.
 
Creekside said:
If the question is how many people actually recover from actual ME in a certain time frame, then yes it does.
Click to expand...
For all we know, PVF might look like ME/CFS at the start, but follow a different trajectory due to different pathologies or just randomness.

However, diagnoses are intended to predict future health. And because we can’t currently separate between the people that will recover and the people that won’t, we can’t say that someone hasn’t got «actual ME/CFS» if what they have looks like ME/CFS now, even if they recover in the future. So we’re stuck with an ME/CFS diagnosis being based on current health.

Meaning that if you have ME/CFS symptoms and other causes have been excluded, you have «actual ME/CFS».
 
EndME said:
If they have certain symptoms for a certain period of time and all reasonable tests to rule out an alternative diagnosis have been conducted they have ME/CFS by definition.
Click to expand...

This was the case for me except I didn't see an ME doctor until a year of a half after viral onset. It was the quick relapse I experienced from returning to work that sealed my dx for disability benefits. I was diagnosed with PVFS/CFS and was considered "atypical" based on my symptoms at the time, he also felt that I would most likely recover in a few years.
 
Aren't the most serious cases those that follow the pattern: trigger - mild - moderate - severe? Those that deteriorate over several years without diagnosis and who continue playing sports, working, etc.? I used to have panic attacks during exertion, and it wasn't until three years later that we understood I had a severe form of exercise-induced panic disorder (SEFD)... I've been bedridden for a year now. Fourth year of symptoms (I had a few months of remission the first year, oddly enough).
 
neophyte32 said:
Aren't the most serious cases those that follow the pattern: trigger - mild - moderate - severe? Those that deteriorate over several years without diagnosis and who continue playing sports, working, etc.? I used to have panic attacks during exertion, and it wasn't until three years later that we understood I had a severe form of exercise-induced panic disorder (SEFD)... I've been bedridden for a year now. Fourth year of symptoms (I had a few months of remission the first year, oddly enough).
Click to expand...
I had a course somewhat like this. Maybe more like

Trigger -> Moderate (3 Weeks) -> Mild (3 Weeks) -> Practically Recovered (3 months) -> Mild (8 months) -> Moderate (1 month) -> Very Severe (3 months) -> Extremely Severe (2 months) -> Very Severe (2 years)

You can probably guess when I started doing intense physiotherapy lol
 
You must log in or register to reply here.
Back
Top Bottom