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Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection, 2023, Thaweethai et al.

Discussion in 'Long Covid research' started by SNT Gatchaman, May 26, 2023.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection
    Tanayott Thaweethai; Sarah E. Jolley; Elizabeth W. Karlson; Emily B. Levitan; Bruce Levy; Grace A. McComsey; Lisa McCorkell; Girish N. Nadkarni; Sairam Parthasarathy; Upinder Singh; Tiffany A. Walker; Caitlin A. Selvaggi; Daniel J. Shinnick; Carolin C. M. Schulte; Rachel Atchley-Challenner; Leora I. Horwitz; Andrea S. Foulkes; RECOVER Consortium Authors; RECOVER Consortium; Judith A. Aberg; Natalie L. Adolphi; Shreya Ahirwar; Shifa Ahmed; Neera Ahuja; Masanori Aikawa; Almary Akerlundh; Teresa T. Akintonwa; Aseel Al-Jadiri; Natalya Alekhina; Heather A. Algren; Akram N. Alshawabkeh; Nariman Ammar; Adit Anand; Brett R. Anderson; Lisa Aponte-Soto; Judy L. Aschner; Mary M. Atha; Andrew M. Atz; Robin L. Aupperle; Mirna Ayache; Eduardo Azziz-Baumgartner; L. C. Bailey; Fiona C. Baker; Venkataraman Balaraman; Jennifer A. Bandy; Dithi Banerjee; Deanna M. Barch; James M. Bardes; Jackson Barlocker; R. G. Barr; Arielle Baskin-Sommers; Sanjib Basu; Tracy A. Battaglia; Leah Baucom; Carmen J. Beamon; Casey L. Beaty; Noam D. Beckmann; Jasmine A. Berry; Nahid Bhadelia; Daksh Bhargava; Sultana Bhuiyan; Jiang Bian; Christian Bime; James M. Bjork; Lora J. Black; Catherine A. Blish; Jason P. Block; Amanda Bogie; Dawn Bolliger; William Bonaventura; Seuli Bose-Brill; Mary B. Bower; Andrew D. Boyd; Jerusha Boyineni; Steven B. Bradfute; Carolyn T. Bramante; M. D. Brannock; J. D. Bremner; Shari B. Brosnahan; Natalie C. Buchbinder; Elliott Bueler; Irina A. Buhimschi; Hulya Bukulmez; H. T. Bunnell; John B. Buse; Elizabeth A. Calhoun; Tingyi Cao; Michael D. Carrithers; Thomas W. Carton; Abigail Case; B.J. Casey; Faye Victoria C. Casimero; Lauren Castro; Teresa Cato; Patricia Ceger; Connie L. Cerullo; Linda Chang; Arunee A. Chang; Praneeth Chebrolu; Yong Chen; Li Qing Chen; Benjamin K. Chen; David Chestek; Robert F. Chew; Deena J. Chisolm; Dominic C. Chow; Maryanne R. Chrisant; Dimitri A. Christakis; Christopher G. Chute; Mine S. Cicek; Cheryl R. Clark; Duncan B. Clark; Geoffrey D. 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Nikolich; Ighovwerha Ofotokun; Elizabeth Ojemakinde; Anna Palatnik; Kristy Palomares; Tanyalak Parimon; Samuel Parry; Jan E. Patterson; Thomas F. Patterson; Rachel E. Patzer; Michael J. Peluso; Priscilla Pemu; Christian M. Pettker; Beth A. Plunkett; Kristen Pogreba-Brown; Athena Poppas; John G. Quigley; Uma Reddy; Rebecca Reece; Harrison Reeder; W. B. Reeves; Eric M. Reiman; Franz Rischard; Jonathan Rosand; Dwight J. Rouse; Adam Ruff; George Saade; Grecio J. Sandoval; Shannon M. Schlater; Fitzgerald Shepherd; Zaki A. Sherif; Hyagriv Simhan; Nora G. Singer; Daniel W. Skupski; Amber Sowles; Jeffrey A. Sparks; Fatima I. Sukhera; Barbara S. Taylor; Larissa Teunis; Robert J. Thomas; John M. Thorp; Paul Thuluvath; Amberly Ticotsky; Alan T. Tita; Katherine R. Tuttle; Alfredo E. Urdaneta; Daisy Valdivieso; Timothy M. VanWagoner; Andrew Vasey; Monica Verduzco-Gutierrez; Zachary S. Wallace; Honorine D. Ward; David E. Warren; Steven J. Weiner; Shelley Welch; Sidney W. Whiteheart; Zanthia Wiley; Juan P. Wisnivesky; Lynn M. Yee; Sokratis Zisis

    IMPORTANCE
    SARS-CoV-2 infection is associated with persistent, relapsing, or new symptoms or other health effects occurring after acute infection, termed postacute sequelae of SARS-CoV-2 infection (PASC), also known as long COVID. Characterizing PASC requires analysis of prospectively and uniformly collected data from diverse uninfected and infected individuals.

    OBJECTIVE
    To develop a definition of PASC using self-reported symptoms and describe PASC frequencies across cohorts, vaccination status, and number of infections.

    DESIGN, SETTING, AND PARTICIPANTS
    Prospective observational cohort study of adults with and without SARS-CoV-2 infection at 85 enrolling sites (hospitals, health centers, community organizations) located in 33 states plus Washington, DC, and Puerto Rico. Participants who were enrolled in the RECOVER adult cohort before April 10, 2023, completed a symptom survey 6 months or more after acute symptom onset or test date. Selection included population-based, volunteer, and convenience sampling.

    EXPOSURE
    SARS-CoV-2 infection.

    MAIN OUTCOMES AND MEASURES
    PASC and 44 participant-reported symptoms (with severity thresholds).

    RESULTS
    A total of 9764 participants (89% SARS-CoV-2 infected; 71% female; 16% Hispanic/Latino; 15% non-Hispanic Black; median age, 47 years [IQR, 35-60]) met selection criteria. Adjusted odds ratios were 1.5 or greater (infected vs uninfected participants) for 37 symptoms. Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months.

    CONCLUSIONS AND RELEVANCE
    A definition of PASC was developed based on symptoms in a prospective cohort study. As a first step to providing a framework for other investigations, iterative refinement that further incorporates other clinical features is needed to support actionable definitions of PASC.

    Link | PDF (JAMA)
     
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  2. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Editorial Disentangling the Postacute Sequelae of SARS-CoV-2: E Unibus Pluram (From One, Many)

     
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  4. Trish

    Trish Moderator Staff Member

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    The prevalence of PEM seem odd.
    28% in the infected group vs 7% in the uninfected group.

    I'm not sure what they were assessing as PEM, but a finding of 7% in the uninfected group seems remarkably high, given the pre pandemic prevalence of ME/CFS of well under 1%, and as far as I know there isn't a list of other diseases that would account for 6% prevalence of PEM, since we don't know of anything else that causes PEM.

    Edit from eFigure2 in Supplement 3: For new onset PEM the frequencies were 28% and 4%.
    I understand the uninfected group were volunteers, not a properly representative sample as required for epidemiology studies.
     
    Last edited: May 26, 2023
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    Haven't read the paper so don't know how they asked about PEM. I suspect the 2 most likely explanations are

    1) asymptomatic infections leading to a few 'healthy controls' actually having long covid and PEM

    2) ambiguous definition of PEM resulting in some people with common-or-garden exertion intolerance mistakenly thinking they have PEM
     
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  6. Ravn

    Ravn Senior Member (Voting Rights)

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    If only someone had applied this sort of thinking to ME decades ago
     
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  7. cassava7

    cassava7 Senior Member (Voting Rights)

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    I suspect that they used the DePaul Short Form PEM questionnaire which, as we have discussed in the past, is quite flawed.
     
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  8. Trish

    Trish Moderator Staff Member

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    I agree with comments above about the huge value of the recognition of ME/CFS and PASC being properly defined for future research. And it's great to see a study that puts PEM and ME/CFS at the heart of the findings and the recognition that it needs more and better research.

    The data is in Supplement 3.

    On page 6
    ME/CFS Definition
    ME/CFS was identified using a definition based on the Institute of Medicine criteria. Participants were classified as having ME/CFS if they met all the following criteria:
    A. Reported fatigue, reported severe or very severe fatigue on PROMIS Global-1071 Question 8, and had a PROMIS Global-10 physical health sub-score ≤10,
    AND
    B. Reported P-E Malaise,
    AND
    C. Reported Sleep disturbance and when asked “In the past 7 days, my sleep was refreshing”, the participant selected “Not at all”, “A little bit”, or “Somewhat”,
    AND
    D.
    Either of the following:
    a) Orthostatic intolerance (orthostatic tachycardia without orthostatic hypotension as obtained from the Active Standing Test)
    OR
    b) Reported brain fog and had a Neuro-QoL Cognition Score ≤40
    ___________________

    Page 10 is a table of symptoms and how they were assessed:
    PEM appears just to be assessed by this description in the RECOVER questionnaire:
    It doesn't have any additional criteria to assess it, unlike fatigue which not only includes Fatigue (being very tired) in the RECOVER questionnaire, but also requires additional severity criteria: PROMIS Fatigue Score (moderate or worse)
     
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  9. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    I would assume that represents "uninfected" were actually infected - just not proven so. I was hoping sophisticated investigations could more accurately assess previous infection status: in particular SARS-CoV-2-specific T cells. I see though that, at least in children, there may be cross-reactivity with previous coronaviruses, so perhaps that wouldn't be reliable (thread for pre-print).
     
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  10. Trish

    Trish Moderator Staff Member

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    I was assuming that too, but I think they did a blood test on the uninfected and if positive reclassified them as infected. I'm not sure how accurate that is. Also as in my postscript to my post, only 4% of the uninfected said their PEM was new onset, so maybe a few of the uninfected sample had pre-existing undiagnosed ME/CFS.
     
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  11. cassava7

    cassava7 Senior Member (Voting Rights)

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    Summary thread on Twitter by a lead researcher within the RECOVER initiative that explains the methodology of the study: https://twitter.com/user/status/1661763345882525696


    They developed a score (using LASSO) to classify participants as having long Covid or not based on a set of 12 symptoms. The score for each symptom accounted for the difference in its prevalence between patients versus controls.

    With a cut-off total score of 12, they obtain a false positive rate (non-PASC controls misclassified as having PASC) of only 4%. PEM counts for 7 points and is the second highest-rated symptom behind smell/taste problems (8 points), whereas fatigue only scores 1 point.
     
    Last edited: May 26, 2023
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  12. Trish

    Trish Moderator Staff Member

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  13. cassava7

    cassava7 Senior Member (Voting Rights)

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    Interestingly, non-long Covid ME/CFS patients diagnosed per the IOM or NICE criteria would score at least 11 points: PEM (7), brain fog (3), fatigue (1) — and most likely dizziness (1) and/or palpitations (2), in which case they would be classified as long Covid cases —.
     
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  14. Trish

    Trish Moderator Staff Member

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    And someone with a loss of sense of smell or taste and a persistent cough would also be diagnosed with long Covid, demonstrating very effectively that there need to be subcategories for research purposes.
     
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  15. cassava7

    cassava7 Senior Member (Voting Rights)

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    Indeed. To me, this definition seems to delineate two major presentations of long Covid: people with PEM and autonomic issues, and people with respiratory and olfactory symptoms (the latter being most likely those with organic sequelae). The next step, in my view, would be to analyze to what extent they overlap — they may, for example, share cognitive symptoms (brain fog), thirst, fatigue and chest pain as common symptoms.
     
    Last edited: May 26, 2023
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  16. Trish

    Trish Moderator Staff Member

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    I'm very pleased to see that long Covid is being researched according to physical symptoms, not psychological ones. Anxiety and depression were asked about but not in the main RECOVER questionnaire:

    Nor do they appear in the list of symptoms to define PASC.

    The results were:

    In the whole cohort prevalence of symptom (eFigure 1):
    Depression: infected: 11% uninfected: 5%
    Anxiety: infected 12% : uninfected 6%:

    In the whole cohort, prevalence of new onset of symptom (eFigure 2):
    Depression: infected: 9% uninfected: 3%
    Anxiety: infected: 8% uninfected: 3%

    In PASC positive participants, ie those scoring at least 12 on the scale shown in the tweet in post #13 above:

    Depression 29%
    Anxiety 27%
    ________________________
     
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  17. CRG

    CRG Senior Member (Voting Rights)

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    A very unusual study population:

    upload_2023-5-26_11-7-28.png

    upload_2023-5-26_11-5-14.png

    This is at variance to other "Long Covid" studies where PASC is associated with higher deprivation numbers.
     
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  18. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    In Long COVID manifests with T cell dysregulation, inflammation, and an uncoordinated adaptive immune response to SARS-CoV-2 (Preprint 2023), it was stated —

    I think that's likely. It's also not uncommon for the LC Facebook groups to have people who "previously had ME", though often having recovered up until Covid.
     
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  19. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Though does match this preprint from April.
     
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  20. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    But unfortunate that they did not report the prevalence rate of ME/CFS.

    They only note that "Among infected participants meeting criteria for ME/CFS, 98%met the criteria for PASC." More interesting would be to know which % of PASC patients meets ME/CFS criteria. I assume they have this information but prefer to keep this information for a separate paper?
     
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