Preprint Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the MBSQ, 2023, Peo et al.

Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the Munich Berlin Symptom Questionnaire MBSQ
Laura C. Peo; Katharina Wiehler; Johannes Paulick; Katrin Gerrer; Ariane Leone; Anja Viereck; Matthias Haegele; Silvia Stojanov; Cordula Warlitz; Silvia Augustin; Martin Alberer; Daniel B. R. Hattesohl; Laura Froehlich; Carmen Scheibenbogen; Lorenz Mihatsch; Rafael Pricoco; Uta Behrends

Purpose
A subset of patients with post-COVID-19 condition (PCC) fulfill the clinical criteria of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). To establish the diagnosis of ME/CFS for clinical and research purposes, comprehensive scores have to be evaluated.

Methods
We developed the Munich Berlin Symptom Questionnaires (MBSQs) and supplementary scoring sheets (SSSs) to allow for a rapid evaluation of common ME/CFS case definitions. The MBSQs were applied to young patients with chronic fatigue and post-exertional malaise (PEM) who presented to the MRI Chronic Fatigue Center for Young People (MCFC). Trials were retrospectively registered ([NCT05778006][1], NCT05638724).

Results
Using the MBSQs and SSSs, we report on ten patients aged 11 to 25 years diagnosed with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19. Results from their MBSQs and from well-established patient-reported outcome measures indicated severe impairments of daily activities and health-related quality of life.

Conclusions
ME/CFS can follow SARS-CoV-2 infection in patients younger than 18 years, rendering structured diagnostic approaches most relevant for pediatric PCC clinics. The MBSQs and SSSs represent novel diagnostic tools that can facilitate the diagnosis of ME/CFS in children, adolescents, and adults with PCC and other post-viral syndromes.

What is known
ME/CFS is a frequent debilitating illness. For diagnosis, an extensive differential diagnostic workup is required and the evaluation of clinical ME/CFS criteria. ME/CFS following COVID-19 has been reported in adults but not in pediatric patients younger than 19 years of age.

What is new
We present novel questionnairs (MBSQs), as tools to assess common ME/CFS case definitions in pediatric and adult patients with post-COVID-19 condition and beyond. We report on ten patients aged 11 to 25 years diagnosed with ME/CFS following asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19.

Link | PDF (Preprint: MedRxiv)

 

Link to MBSQ in Supplementary materials (1.5 MB).

 

It’s a good idea. I think it would be helpful to also assess comorbidities. It would also be helpful to have a minimum duration for PEM to rule stop exertional intolerance scoring.

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Haven't read the paper yet, but Scheibenbogen recently said in an interview that PEM has to have a minimum duration of 24 hours for her to consider it to be the type of PEM experienced in ME/CFS.

 

This makes a lot of sense to me. I have had trouble convincing some of my more astute medical colleagues that ME is a specific category and end up concluding that it is the length of PEM that makes it distinct. It seems to me a bit like snakes and ladders. You get near the top of the board and then you hit a snake and you are way down the bottom again and know it will take at least five rolls of the dice to get anywhere near back up again.

I have had post Covid problems on and off (after at least two re-infections) for over a year but I don't think I have had PEM in this sense. I feel zonked for the rest of the day if I do too much but that is not the same thing, as I see it. I also have periods of feeling ill rather than just feeble but that seems to wax and wane with no pattern.

 

@Andy posted some interesting data from a Lenny Jason, study about length of PEM (the dePaul symptom questionnaires questions on this are more about exertional intolerance).

IIRC, the data clustered into two groups, a shorter duration of less than 14 hours, and a longer duration of more than that (I’m not entirely sure if this was based on individuals overall, or data for each episode of PEM).

 

I think this is a step in the right direction, and I think that fatigability immediately after exertion being labelled as PEM, as per Jason et als PEM assessment tools and which I don't agree with, makes this necessary.

I believe that fatigability immediately after exertion in pwME should be unsurprising, given that everybody experiences this; it should also be unsurprising that a patient group that already has reduced available energy should experience more effects of those energy reserves being drained, as proportionally they are experiencing a heavier drain. However, that still does not make it PEM in my experience as fatigability experienced after exertion is, relatively, quick to clear (typically same day), while PEM is both delayed (12 hrs+) and lasts longer. (24 hrs+).

 

I already had mod/severe ME of long duration when I got C and the LC 3+years ago, I experience LC just like that very rapidly intensifying symptoms coming on randomly. Completely different pattern and quality of breathlessness too. The breathlessness is horrendous.

 

Looks pretty good to me. Certainly more comprehensive than, well, pretty much all the usual alternatives.

 

published
Pediatric and adult patients with ME/CFS following COVID-19: A structured approach to diagnosis using the Munich Berlin Symptom Questionnaire (MBSQ) | European Journal of Pediatrics (springer.com)

 

Lenny Jason is now added to the list of authors,

• Laura-Carlotta Peo,

• Katharina Wiehler,

• Johannes Paulick,

• Katrin Gerrer,

• Ariane Leone,

• Anja Viereck,

• Matthias Haegele,

• Silvia Stojanov,

• Cordula Warlitz,

• Silvia Augustin,

• Martin Alberer,

• Daniel B. R. Hattesohl,

• Laura Froehlich,

• Carmen Scheibenbogen,

• Leonard A. Jason,

• Lorenz L. Mihatsch,

• Rafael Pricoco &

• Uta Behrends

Abstract has changed

Abstract
A subset of patients with post-COVID-19 condition (PCC) fulfill the clinical criteria of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). To establish the diagnosis of ME/CFS for clinical and research purposes, comprehensive scores have to be evaluated. We developed the Munich Berlin Symptom Questionnaires (MBSQs) and supplementary scoring sheets (SSSs) to allow for a rapid evaluation of common ME/CFS case definitions. The MBSQs were applied to young patients with chronic fatigue and post-exertional malaise (PEM) who presented to the MRI Chronic Fatigue Center for Young People (MCFC). Trials were retrospectively registered (NCT05778006, NCT05638724). Using the MBSQs and SSSs, we report on ten patients aged 11 to 25 years diagnosed with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19. Results from their MBSQs and from well-established patient-reported outcome measures indicated severe impairments of daily activities and health-related quality of life.

Conclusions: ME/CFS can follow SARS-CoV-2 infection in patients younger than 18 years, rendering structured diagnostic approaches most relevant for pediatric PCC clinics. The MBSQs and SSSs represent novel diagnostic tools that can facilitate the diagnosis of ME/CFS in children, adolescents, and adults with PCC and other post-infection or post-vaccination syndromes.

What is Known:

• ME/CFS is a debilitating disease with increasing prevalence due to COVID-19. For diagnosis, a differential diagnostic workup is required, including the evaluation of clinical ME/CFS criteria.

• ME/CFS after COVID-19 has been reported in adults but not in pediatric patients younger than 19 years.

What is New:

• We present the novel Munich Berlin Symptom Questionnaires (MBSQs) as diagnostic tools to assess common ME/CFS case definitions in pediatric and adult patients with post-COVID-19 condition and beyond.

• Using the MBSQs, we diagnosed ten patients aged 11 to 25 years with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19.