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How many Long COVID patients develop ME/CFS? by Art Mirin (August 20, 2022)

Discussion in 'ME/CFS research news' started by Tom Kindlon, Aug 22, 2022.

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  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Art has kindly given me permission to share this

    How many Long COVID patients develop ME/CFS? Art Mirin, 8/20/22

    Overview: Of the 5 studies of Long COVID patients below, 4 of them addressed ME/CFS onset (per case definition); the other looked at ME/CFS symptoms. Two of them used CCC, one used NAM, and the other Fukuda. The two that used CCC might not have been independent cohorts, as they were from the same facility in Germany with overlapping co-authors. Two of the four studies used patients with persistent moderate to severe fatigue and exertion intolerance for more than six months after mild to moderate COVID-19. A third used patients with shortness of breath. The only study that did not control for symptoms (Bonilla, Stanford) used a cohort of 134 people and found 36% to satisfy the ME/CFS case definition.

    Kedor C, Freitag H, Meyer-Arndt L, et al. Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany – a first analysis of a prospective observational study. MedRxiv, Preprint 2021. Doi: 10.1101/2021.02.06.21249256.

    Charite University Hospital 42 patients 45% ME/CFS (CCC) However, cohort is described as: “persistent moderate to severe fatigue and exertion intolerance for more than six months after mild to moderate COVID-19”. That is, this is not a random sample of LC patients.

    Haffke M, Freitag H, Rudolf G, et al. Endothelial dysfunction and altered endothelial biomarkers in patients with post-COVID-19 syndrome and chronic fatigue syndrome (ME/CFS). J Transl Med 2022; 20(138). Doi: 10.1186/s12967-022-03346-2.

    Charite University Hospital 30 patients 47% ME/CFS (CCC) Is this cohort separate from that of Kedor, et al (2021), which was published as a preprint? Kedor, et al. cites study evaluation period July-Nov 2020. Cannot find corresponding information here. Note too that the cohort is described as: “persistent moderate to severe fatigue and exertion intolerance for more than six months after mild to moderate COVID-19”. That is, this is not a random sample of LC patients.

    Mancini DM, Brunjes DL, Lala A, et al. Use of Cardiopulmonary Stress Testing for Patients with Unexplained Dyspnea Post-Coronavirus Disease. JACC: Heart Failure, 2021; 9(12):927-937. Doi: 10.1016/j.jchf.2021.10.002.

    Mt Sinai 41 patients 46% ME/CFS (Fukuda) “This was a prospective study of patients who had been reverse transcription polymerase chain reaction positive for SARS-CoV-2 and who developed new and persistent shortness of breath for >3 months after recovery.” That is, this was not a random sampling of LC patients.

    Bonilla H, Quach TC, Tiwari A, et al., Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is common in post-acute sequelae of SARS-CoV-2 infection (PASC): results from a post-COVID-19 multidisciplinary clinic. BMJ Yale Preprint, 2022. Doi: 10.1101/2022.08.03.22278363.

    Stanford 134 patients 36% ME/CFS (NAM) Original cohort had 140 patients, but 6 excluded. 105 patients had symptoms longer than 6 months; of those, 46% satisfied ME/CFS case definition.

    Twomey R, DeMars J, Franklin K, et al. Chronic Fatigue and Postexertional Malaise in People Living with Long COVID: An Observational Study. Phys. Ther. 2022; 102(4) pzac005. Doi: 10.1093/ptj/pzac005.

    University of Calgary 213 patients Did not evaluate using ME/CFS case definition 71% had chronic fatigue, 59% PEM

     
    Lilas, sebaaa, merylg and 11 others like this.
  2. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    Is notable that still no one is managing to reach the severe patients to assess their condition. They obviously can't be coming into clinics for care and nothing has been learnt from the exclusion of these patients in ME/CFS research either. They just aren't appearing in any of the research and the consequences are likely biasing the data because I suspect those severe patients are lot more likely to be suffering ME/CFS symptoms.
     
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    This very worrying, given there are little or no relevant services for people with severe or very severe ME, failure to also recognise the existence of severe Long Covid patients will mean they also will be missed in planning new services.

    Also, as with ME, this increases the risk of poorly designed research ending up recommending inappropriate or even harmful rehabilitation for those that have the core ME symptom of PEM. With severe or very severe patients displaying PEM any rehabilitation aimed at increasing activity levels is self evidently a non starter, whereas mild or moderate patients may have some capacity to undertake rehabilitation over a fixed term intervention period, especially if also reducing activity in other areas, before PEM catastrophically kicks in.
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Not quite same but there was also this study:
    Post-Acute COVID-19 Symptoms, a Potential Link with [ME/CFS]: A 6-Month Survey in a Mexican Cohort, 2021, González-Hermosillo et al
    https://www.s4me.info/threads/post-...-cohort-2021-gonzález-hermosillo-et-al.20913/

     
    RedFox and Peter Trewhitt like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Most likely simply not seen in clinics and most are overflowing with demand so they obviously don't bother seeking them out. I've seen many of the usual "too sick for this clinic, discharged" we see in ME. The clinics only want the easy cases, makes them look good even though they're useless.
     
  6. RedFox

    RedFox Senior Member (Voting Rights)

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    Location:
    Pennsylvania
    Their numbers make me wonder if something's up with their methodology. 23 people met Fukuda, but 25 met the much more restrictive ICC? And only 17 met the fairly inclusive IOM criteria?
     

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