Looking for references on resolution of long COVID in year one and beyond

Discussion in 'Long Covid research' started by Karen Kirke, May 19, 2025 at 4:09 PM.

  1. Karen Kirke

    Karen Kirke Established Member (Voting Rights)

    Messages:
    87
    I hope someone will be able to point me to studies that have documented the resolution of (ME/CFS-like) long COVID at regular intervals during the first year and beyond.

    A bit like this from the Dubbo study by Hickie et al. 2006 https://pmc.ncbi.nlm.nih.gov/articles/PMC1569956/:
    I know I have read some but I haven't retained which studies they are in, so would appreciate help!
     
  2. Utsikt

    Utsikt Senior Member (Voting Rights)

    Messages:
    2,992
    Location:
    Norway
    What is «ME/CFS-like» LC?
     
    Yann04, Kitty and Karen Kirke like this.
  3. EndME

    EndME Senior Member (Voting Rights)

    Messages:
    1,613
    Hey, @Karen Kirke ! I'm not aware of such studies of the top of my head. There are many such studies on Long-Covid in general (some of which also have control groups and then there's also those comparing Covid to other infections) but when it comes to ME/CFS-like Long-Covid things are not as clear. There are of course studies that assess PEM and some other ME/CFS symptoms longitudinally (Patient-Led has done some work on this for instance in Characterizing long COVID in an international cohort: 7 months of symptoms and their impact), but it isn't always quite clear what ME/CFS-like long Covid then looks like or what it means and whether one can just "symptom count" ones way to ME/CFS using such studies. Presumably post-ICU syndrome might also look quite similar for a number of weeks at least, but is probably rather distinct in most cases.

    I know of some studies that give an indication on how things may roughly look like (for instance Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome: results from a prospective observational cohort) but nothing too comparable for what you're looking for.

    There was very recently a risk-analysis for Long-Covid/ME/CFS titled The rising cost of Long COVID and ME/CFS in Germany, 2025, ME/CFS Research Foundation. Whilst it is a model, the authors might be able to tell you which data they based their model on.
     
  4. forestglip

    forestglip Senior Member (Voting Rights)

    Messages:
    2,334
    Just from a quick Google Scholar search of 'long covid prevalence followup "24 months"'. I didn't read these in detail and they mostly seem to be about long COVID in general, but in case it's helpful:

    Determinants of the onset and prognosis of the post-COVID-19 condition: a 2-year prospective observational cohort study (2023, The Lancet Regional Health)

    Recovery and symptom trajectories up to two years after SARS-CoV-2 infection: population based, longitudinal cohort study (2023, BMJ)

    Epidemiology of post-COVID conditions beyond 1 year: a cross-sectional study (2023, Public Health)

    Symptom burden and post-COVID-19 syndrome 24 months following SARS-CoV-2 infection: Longitudinal population-based study (2025, Journal of Infection)

    Characteristics and Prevalence of Sequelae after COVID-19: A Longitudinal Cohort Study (2024, Infections & Chemotherapy)
     
  5. Karen Kirke

    Karen Kirke Established Member (Voting Rights)

    Messages:
    87
    I'm not interested in people who were in ICU and have organ damage or who only have loss of taste or smell or breathing issues. I'm interested in people who have something that looks like ME/CFS, so with fatigue, PEM, exercise intolerance, cognitive dysfunction etc as prominent symptoms.
     
    alktipping, Yann04, Eleanor and 3 others like this.
  6. Utsikt

    Utsikt Senior Member (Voting Rights)

    Messages:
    2,992
    Location:
    Norway
    Thank you for clarifying. I think you’re going to have a hard time finding studies with proper assessments of PEM. Most treat it as fatigue or use imprecise questionnaires that would also pick up DOMS, etc.
     
  7. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    8,138
    Location:
    UK
    I fear there'll be few worthwhile studies, if any.

    I'm not sure who records how many/what proportion recover naturally. It would probably only be studied as part of a treatment trial, and as most of those involve CBT etc and don't use objective outcomes, it's difficult to make anything of them.
     
    alktipping and Yann04 like this.
  8. Karen Kirke

    Karen Kirke Established Member (Voting Rights)

    Messages:
    87
    Thank you all so much for the ideas and links - keep them coming!

    The tantalizing thing is that it will just be a detail - a line or one of many figures - and I'm fairly sure I've come across at least one and thought to myself, "Yep, just like Dubbo".

    I'll post here if I find anything helpful.
     
  9. EndME

    EndME Senior Member (Voting Rights)

    Messages:
    1,613
  10. Karen Kirke

    Karen Kirke Established Member (Voting Rights)

    Messages:
    87
    This might be the one I was thinking of:
    Estimated Global Proportions of Individuals With Persistent Fatigue, Cognitive, and Respiratory Symptom Clusters Following Symptomatic COVID-19 in 2020 and 2021. JAMA. 2022 Oct 25;328(16):1604-1615.
    That was for all symptom clusters. They also looked at 3 clusters separately: fatigue, respiratory and cognitive. I think we'd appear in the cognitive cluster as well, but here's how it looks for non-hospitalized females and males. (There'll be some of us in the hospitalized bunch too, I imagine, after all, I was hospitalized with the viral meningitis that triggered my ME/CFS.)

    upload_2025-5-20_19-44-55.png

    upload_2025-5-20_19-45-39.png
     
  11. Karen Kirke

    Karen Kirke Established Member (Voting Rights)

    Messages:
    87

Share This Page