Tag: Germany

Feasibility, Adherence, Acceptance and Usability of a Multimodal Telemonitoring for Pediatric Post-COVID Syndrome: A Bicentric Pilot Study

Abstract:

Existing healthcare infrastructure struggles to meet the complex care required for pediatric Post-COVID Syndrome (pPCS). Telemonitoring offers potential to enhance care access, reduce patient burden, and ensure continuity. This study introduces and evaluates a novel, multimodal telemonitoring concept for pPCS with high translational potential for broader pediatric chronic and post-infectious conditions. Telemonitoring included a patient app, digital sensors (spirometer, smartwatch), Patient Reported Outcome Measures, chat/video consultations (VC), and a medical telemonitoring platform.

Patients aged 12-17 years with diagnosed PCS were recruited from two pPCS outpatient university clinics in Bielefeld and Munich, Germany. Monitoring lasted three months. Evaluation focused on feasibility, adherence, acceptance, and usability, using monitoring data, the System Usability Scale (SUS), Technology Usage Inventory (TUI), and a custom survey completed by patients and parents. 30 patients (mean age: 15y ± 1.9; 57% female (17/30); mean Baseline Bell-Score: 36.4) and 30 parents participated.

Adherence was high, with an average of 3.4 (smartwatch) to 4.6 (spirometry) measurements/week. Questionnaire response rate was 86% (411/480) and 97% (58/60) of VCs were conducted. SUS scores indicated very high usability (patients: 81.25/100; parents: 75.42/100). TUI results showed low skepticism, and high interest. Telemonitoring supported symptom management independent of in-person visits, despite sensor connectivity issues.

This is the first study to demonstrate successful integration of telemonitoring in pPCS, with high adherence and positive feedback from all stakeholders supporting its potential. Despite occasional technical challenges and resource needs, this concept shows promise for broader hybrid telemonitoring care implementation in PCS and other post-infectious syndromes.

TRIAL REGISTRATION: German Clinical Trials Register (DRKS), trial registration number: DRKS00029354. Registered 07 February 2023 – Retrospectively registered https://drks.de/search/en/trial/DRKS00029354/entails.

Source: Oftring ZS, Schmidt J, Greenfield J, Hägele M, Farzaneh A, Hamelmann E, Behrends U, Kuhn S. Feasibility, Adherence, Acceptance and Usability of a Multimodal Telemonitoring for Pediatric Post-COVID Syndrome: A Bicentric Pilot Study. J Med Syst. 2026 May 9;50(1):76. doi: 10.1007/s10916-026-02409-x. PMID: 42105038. https://link.springer.com/article/10.1007/s10916-026-02409-x (Full text)

Risk factors for severe post-COVID condition in children, adolescents, and young adults

Abstract:

Post-COVID condition (PCC) in children and young people (CYP, PCCcyp) remains a significant health burden. Early identification of patients at risk for severe disease, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is crucial for timely and adequate care. This monocentric, observational registry study, performed at a tertiary pediatric hospital in Germany, included CYP aged 7-25 years with PCCcyp at diagnosis. Standardized clinical assessment tools and patient-reported outcome measures were applied, including the novel Munich Long COVID Symptom Questionnaire (MLCSQ).

Severe PCC was defined by chronic symptom clusters, Fatigue Severity Scale (FSS), Total Composite Autonomic Symptom Score-31 (COMPASS-31), SF-36 composite scores, Bell Score, and confirmed ME/CFS diagnosis. Among 120 participants, severe PCCcyp was associated with a higher number of acute symptoms (ORadj 1.22, P < 0.001), acute orthostatic intolerance (ORadj 9.87, P = 0.002), acute trouble concentrating (ORadj 11.8, P = 0.005), and female sex (OR 3.31, P = 0.031).

Categorizing acute symptoms at a threshold of ≥ 12 yielded optimal model performance (AUC 0.857; sensitivity 65.6%; specificity 90.2%). ME/CFS was diagnosed in 24% of participants, all within the severe PCCcyp cluster, and was characterized by greater acute symptom complexity, more fatigue, more autonomic symptoms, and poorer function.

Conclusions: The number and pattern of acute symptoms during SARS-CoV-2 infection may serve as early, specific predictors of severe PCCcyp. Patients with ≥ 12 acute symptoms should be closely monitored to enable early diagnosis of severe PCCcyp and ME/CFS. A distinct cluster of severely affected patients, frequently with ME/CFS, was identified.

Trial registration: ClinicalTrials.gov: NCT05638724; Ethics approval (511/21, 2025-465-S-SB).

Source: Donath Q, Haegele M, Schindler D, Welzhofer T, Christa C, Grabbe A, Leone A, Ilhan C, Weidmann C, Eberhartinger M, Bechtold S, Bursch N, Wolf H, Hieber H, Peo LC, Bucka LA, Stojanov S, Warlitz C, Alberer M, Gerrer K, Hausruckinger A, Mittelstrass K, Wendtner CM, Hoechstetter MA, Grübl A, Toepfner N, Pricoco R, Scheibenbogen C, Mihatsch LL, Behrends U. Risk factors for severe post-COVID condition in children, adolescents, and young adults. Eur J Pediatr. 2026 May 4;185(5):344. doi: 10.1007/s00431-026-06995-3. PMID: 42082813. https://link.springer.com/article/10.1007/s00431-026-06995-3 (Full text available as PDF file)

Cardiopulmonary Exercise Testing Reveals Functional Limitations and Work Disability in Severe Post-COVID-19 and ME/CFS Patients

Abstract:

Background: Patients severely affected by post-COVID-19 condition (PCC) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often experience long-term work incapacity, contributing to a growing economic burden. Organ-centered clinical diagnostics frequently fail to explain their work disability.

Objectives: We aimed to objectively assess physical work ability using cardiopulmonary exercise testing (CPET) in a cohort of long-standing and severely affected PCC patients. We hypothesized: (1) patients with ME/CFS exhibit lower peak oxygen uptake (VO₂peak [mL/min/kg]) and peak power output (PPO [W/kg]) than those without; (2) most patients demonstrate objective work disability, closely aligned with subjective perception of disability; (3) oxygen pulse (O2 pulse [mL/bpm]) is reduced in ME/CFS, independent of comorbidity.

Methods: The study was conducted in the Department of Sports Medicine, Prevention and Rehabilitation at Johannes Gutenberg-University Mainz (Mainz, Germany). Between July 31, 2023, and March 31, 2025, a total of 92 PCC patients with suspected occupational disease underwent symptom-limited CPET and completed the Canadian Consensus Criteria, Bell Disability Scale (Bell-Score), and DePaul Symptom Questionnaire (Post-Exertional Malaise) Short Form (DSQ-PEM).

Results: Nearly half of the patients (49%) met ME/CFS criteria and 79% screened positive on the DSQ-PEM. ME/CFS patients showed significantly lower VO₂peak (13.0 ± 3.1 vs. 15.4 ± 4.9, p = 0.012), PPO (0.9 ± 0.3 vs. 1.1 ± 0.5, p = 0.014), and O₂ pulse (7.7 ± 2.0 vs. 8.5 ± 1.9, p = 0.047) compared to those without ME/CFS. Overall, 66% of patients met objective thresholds for work disability (VO₂peak < 15 mL/min/kg or PPO < 1 W/kg). Forty-five patients (51%) had a Bell-Score ≤ 30 and 82% from those had VO₂peak < 15 and/or PPO < 1. VO₂peak and PPO significantly correlated with Bell-Score (r = 0.3, p = 0.005 and r = 0.3, p = 0.003) and were the lowest among patients on medical sick leave (13.3 ± 3.3 and 0.9 ± 0.3), compared to those in occupational reintegration (16.0 ± 3.9, p = 0.04 and 1.2 ± 0.5, p = 0.024) or currently working (18.0 ± 7.1, p = 0.036 and 1.2 ± 0.5, p = 0.015).

Conclusions: Severely affected PCC patients exhibit objective work disability, particularly those with ME/CFS. VO₂peak and PPO are associated with subjective disability and occupational status. Therefore, early integration of CPET into clinical and occupational evaluations can inform individualized therapy planning and return-to-work decisions.

Trial registration DRKS, DRKS00032394. Registered 28 July 2023, https://drks.de/search/de/trial/DRKS00032394.

Source: Tomaskovic A, Weber V, Ochmann DT, Hillen B, Neuberger EWI, Brahmer A, Lachtermann E, Lieb K, Simon P. Cardiopulmonary Exercise Testing Reveals Functional Limitations and Work Disability in Severe Post-COVID-19 and ME/CFS Patients. Sports Med Open. 2026 Apr 27;12(1):50. doi: 10.1186/s40798-026-00995-1. PMID: 42043742. https://link.springer.com/article/10.1186/s40798-026-00995-1 (Full text)

The Role of ME/CFS Phenotype in Outpatient Post-COVID Rehabilitation

Abstract:

Post-COVID-19 syndrome (PCS) shares core clinical features with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), particularly persistent fatigue and post-exertional malaise (PEM). However, the prevalence of ME/CFS among PCS rehabilitation outpatients remains unclear.

Medical records of 216 PCS rehabilitation outpatients (57% female; age 47.7±12.5; January 2021 to April 2022) were retrospectively reviewed. During rehabilitation and at a six-month telephone follow-up, ME/CFS was diagnosed using the Canadian Consensus Criteria (CCC). Demographics, body mass index (BMI), FAS, and 6MWT were compared between phenotype and non-phenotype groups using logistic regression, repeated measures ANOVA, and chi-square tests (α=0.05). Of 216 patients, 15 (93% female; age 40.6±10.7; BMI 25.7±5.6) met ME/CFS criteria, yielding a prevalence of 6.9%.

Compared with non-ME/CFS phenotype, ME/CFS phenotype patients were significantly younger (p=0.01) and predominantly female (p=0.003). Baseline FAS was significantly higher (35.8±6.4 vs. 27.8±8.6, p=0.001) and did not improve (Δ +1.3±4.5 vs. Δ -5.1±6.2, p<0.001). Baseline 6MWT was significantly lower (479±132 m vs. 540±96.1 m, p=0.02) and both groups improved over time, but between-group change was not significant (p=0.49).

Approximately 7% of PCS in outpatient rehabilitation exhibit ME/CFS, characterized by severe, persistent fatigue, female predominance, and attenuated functional gains. While the FAS is a practical screening tool, confirmation via CCC remains essential. Future studies should validate these findings and explore tailored rehabilitation strategies for patients with ME/CFS.

Source: Kaiserseder M, Prüfer F, Untersmayer-Elsenhuber E, Zwick RH. Welche Rolle spielt der ME/CFS-Phänotyp in einer ambulanten Post-COVID-Rehabilitation? [The Role of ME/CFS Phenotype in Outpatient Post-COVID Rehabilitation]. Pneumologie. 2026 Mar 30. German. doi: 10.1055/a-2823-6976. Epub ahead of print. PMID: 41911688. https://pubmed.ncbi.nlm.nih.gov/41911688/ (Full text available in German)

Healthcare Situation of 3,345 Long COVID Patients in Germany: Results of a Nationwide Survey

Abstract:

Long COVID includes persistent symptoms after SARS CoV 2 infection and leads to multiple physical and psychosocial burdens.Between March and April 2025, a nationwide sample of long COVID patients was recruited by means of an anonymous online survey. Demographic parameters, symptoms, use of outpatient/inpatient care services and subjective satisfaction with care were recorded.

In total, 3345 people (average age 49 ± 13 years; 81.5% women) completed the survey. 83.8% reported a medically confirmed long COVID diagnosis, with a further 12.2% reporting a post-vac syndrome. The average duration of symptoms was 2.8 ± 1.1 years, with only 36.4% reporting an improvement in their symptoms over time. Almost nine out of ten patients (89.1%) were on long-term sick leave (average 1.8 ± 1.3 years), 70.8% reported total or partial incapacity for work and 46.4% applied for a pension. General practitioner care was the first point of contact for 75.7%. Over the course of the illness, 93% consulted more than three and 21.5% more than ten different doctors. Personal financial contributions were high: 41.4% invested more than € 1,000 and 11.3% more than € 10,000 in diagnostics or therapy. 60% received a rehabilitation intervention. Overall, 97.2% rated their care as “poor” or “very poor”.

This survey highlights a high and persistent burden among long COVID patients, as well as significant socioeconomic consequences, accompanied by a predominantly negative evaluation of the current care situation. Improvements require structured, easily accessible, and cross-sectoral services. Improving the primary care system, establishing clear referral pathways, and (where clinically indicated) integrating rehabilitative interventions into an interdisciplinary care concept could help to improve the care situation of patients with long COVID.

Source: Gloeckl R, Rischer R, Schneeberger T, Jarosch I, Blome C, Koczulla R. Versorgungssituation von 3345 Long-COVID-Betroffenen in Deutschland: Ergebnisse einer bundesweiten Befragung [Healthcare Situation of 3,345 Long COVID Patients in Germany: Results of a Nationwide Survey]. Pneumologie. 2025 Nov 11. German. doi: 10.1055/a-2725-5650. Epub ahead of print. PMID: 41218624. https://pubmed.ncbi.nlm.nih.gov/41218624/  https://www.thieme-connect.de/products/ejournals/html/10.1055/a-2725-5650 (Full text available in German]

Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations

Abstract:

Health data generated by apps and devices are increasingly popular and expected to affect various aspects of doctor-patient relationships. No longer confined to medically authorised and certified health technologies, a range of biomedical data-from heart rate to blood pressure or oxygen saturation-are captured and processed by consumer health devices. This article outlines different responses of physicians to patients collecting data with popular consumer devices and considers how the data may challenge or reify medical authority.

Based on semi-structured interviews with doctors and chronically ill patients in Germany from 2021 to 2023, we compare cases from diabetes, sleep disorders, cardiovascular conditions, obesity and ME/CFS and explore when, how and for what reasons different medical specialists consider patient-generated data (PGD) from consumer devices in outpatient settings.

Their response registers vary: whereas some physicians reject PGD that seem to compete with their diagnostic activities, others tolerate the data (collection), whereas still others more readily include them into their diagnostic practices. This suggests nuanced strategies for navigating the demarcation between accepting or rejecting ‘uninvited’ participation through PGD from consumer apps and devices.

Source: Augst AK, Lämmerhirt D, Schubert C. Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations. Sociol Health Illn. 2024 Nov 14. doi: 10.1111/1467-9566.13864. Epub ahead of print. PMID: 39540662. https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13864 (Full text)

The German Multicenter Registry for ME/CFS (MECFS-R)

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystemic disease characterized by a complex, incompletely understood etiology.

Methods: To facilitate future clinical and translational research, a multicenter German ME/CFS registry (MECFS-R) was established to collect comprehensive, longitudinal, clinical, epidemiological, and laboratory data from adults, adolescents, and children in a web-based multilayer-secured database.

Results: Here, we present the research protocol and first results of a pilot cohort of 174 ME/CFS patients diagnosed at two specialized tertiary fatigue centers, including 130 (74.7%) adults (mean age 38.4; SD 12.6) and 43 (25.3%) pediatric patients (mean age 15.5; SD 4.2). A viral trigger was identified in 160/174 (92.0%) cases, with SARS-CoV-2 in almost half of them. Patients exhibited severe functional and social impairment, as reflected by a median Bell Score of 30.0 (IQR 30.0 to 40.0) and a poor health-related quality of life assessed with the Short Form-36 health survey, resulting in a mean score of 40.4 (SD 20.6) for physical function and 59.1 (SD 18.8) for mental health.

Conclusions: The MECFS-R provides important clinical information on ME/CFS to research and healthcare institutions. Paired with a multicenter biobank, it facilitates research on pathogenesis, diagnostic markers, and treatment options. Trial registration: ClinicalTrials.gov NCT05778006.

Source: Hieber H, Pricoco R, Gerrer K, Heindrich C, Wiehler K, Mihatsch LL, Haegele M, Schindler D, Donath Q, Christa C, Grabbe A, Kircher A, Leone A, Mueller Y, Zietemann H, Freitag H, Sotzny F, Warlitz C, Stojanov S, Hattesohl DBR, Hausruckinger A, Mittelstrass K, Scheibenbogen C, Behrends U. The German Multicenter Registry for ME/CFS (MECFS-R). J Clin Med. 2024 May 28;13(11):3168. doi: 10.3390/jcm13113168. PMID: 38892879; PMCID: PMC11172639. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11172639/ (Full text)

Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

in English, German

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, chronic multisystemic disease which, depending on its severity, can lead to considerable physical and cognitive impairment, loss of ability to work and the need for nursing care including artificial nutrition and, in very severe cases, even death.

The aim of this D-A-CH (Germany, Austria, Switzerland) consensus statement is 1) to summarize the current state of knowledge on ME/CFS, 2) to highlight the Canadian Consensus Criteria (CCC) as clinical criteria for diagnostics with a focus on the leading symptom post-exertional malaise (PEM) and 3) to provide an overview of current options and possible future developments, particularly with regard to diagnostics and therapy. The D-A-CH consensus statement is intended to support physicians, therapists and valuer in diagnosing patients with suspected ME/CFS by means of adequate anamnesis and clinical-physical examinations as well as the recommended clinical CCC, using the questionnaires and other examination methods presented.

The overview of the two pillars of therapy for ME/CFS, pacing and symptom-relieving therapy options, is intended not only to provide orientation for physicians and therapists, but also to support decision-makers from healthcare policy and insurance companies in determining which therapy options should already be reimbursable by them at this point in time for the indication ME/CFS.

Source: Hoffmann K, Hainzl A, Stingl M, Kurz K, Biesenbach B, Bammer C, Behrends U, Broxtermann W, Buchmayer F, Cavini AM, Fretz GS, Gole M, Grande B, Grande T, Habermann-Horstmeier L, Hackl V, Hamacher J, Hermisson J, King M, Kohl S, Leiss S, Litzlbauer D, Renz-Polster H, Ries W, Sagelsdorff J, Scheibenbogen C, Schieffer B, Schön L, Schreiner C, Thonhofer K, Strasser M, Weber T, Untersmayr E. Interdisziplinäres, kollaboratives D-A-CH Konsensus-Statement zur Diagnostik und Behandlung von Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom [Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome]. Wien Klin Wochenschr. 2024 Aug;136(Suppl 5):103-123. German. doi: 10.1007/s00508-024-02372-y. Epub 2024 May 14. PMID: 38743348. https://pubmed.ncbi.nlm.nih.gov/38743348/

Multimodal treatment strategies for homebound people with severe ME/CFS: a scoping review

Abstract:

Purpose: This scoping review aims to provide an overview of previously published treatment strategies that are multimodal, rather than purely drug-based and may be considered for home- or bedbound ME/CFS patients. Thus, the focus lies upon the analyses of telemedicine as well as home treatment elements. In addition, the evaluation and assessment methods used in these studies will be further discussed.

Methods: Using the scoping review method, a literature analysis was conducted resulting in a total of 14 publications which met the predefined criteria. Inclusion was based on models applicable to housebound individuals with ME/CFS, focusing on social medicine and psychological support services rather than individual drug strategies.

Results: The analysis demonstrated that the appropriate treatment methods were predominantly home visits (n=5) or a telemedicine format (n=7). Studies which used alternative settings were included if conversion to a telemedicine format was viable. The important factors highlighted in several studies (n=8), when considering this patient group, were individualisation and flexibility of the treatment methods – and thus the ability to address the day-to-day levels of impairment. The explicit involvement of families in the treatment plan were described in a total of six studies. In ten articles, the treatment concept was additionally evaluated, predominantly using questionnaires (n=7), whilst the questionnaires used were not consistent. Qualitative evaluations were invariably conducted using Brown and Clarke‘s thematic analysis (n=3).

Conclusion: Publications on multimodal treatment strategies for homebound ME/CFS patients are rare. However approaches using home visits or telemedicine are described. The majority of identified publications addressed the need for individualised as well as flexible patient care, whilst some were dedicated to the added value of involving the patients’ family. The data outline the specific challenges associated with the care of severely affected ME/CFS patients that should also be considered in the context of research.

Source: Mayer-Huber S, Kircher A, Eberhartinger M, Stojanov S, Behrends U. Multimodale Behandlungsstrategien für hausgebundene Menschen mit schwerem ME/CFS: ein Scoping Review. Gesundheitswesen. 2024 May 10. German. doi: 10.1055/a-2323-4108. Epub ahead of print. PMID: 38729210. https://www.thieme-connect.de/products/ejournals/abstract/10.1055/a-2323-4108

Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective

Abstract:

in English, German

Background: ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that is predominantly viewed as a neuroimmunological multisystem disease, which is still unknown to many doctors in Germany or which they classify as a psychosomatic disease. From their perspective, ME/CFS patients report significant deficits in terms of medical treatment and a doctor-patient relationship (DP relationship) that is perceived as problematic. The aim of the present study is to more precisely analyse the process of finding a diagnosis as an influencing factor on the DP relationship in ME/CFS from the point of view of those affected.

Method: As part of an explorative qualitative survey, 544 ME/CFS patients (> 20 years; 455 ♀, 89 ♂) with a medical diagnosis of ME/CFS were asked in writing about their experiences with regard to the process of finding a diagnosis. The sampling was previously done by self-activation and via the snowball principle. The questionnaire to be answered was structured analogously to a focused, standardized guideline interview. The evaluation was carried out as part of a qualitative content analysis according to Mayring. Some of the results were subsequently quantified.

Results: The participants described what they saw as the inadequate process of making a diagnosis as a central factor in a problematic DP relationship in ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness, insist on their level of knowledge, ignore patient knowledge and disregard scientific information provided. They follow the standard program, think in “pigeonholes” and are incapable of systemic thinking. This has a significant impact on the DP relationship.

Discussion: From the point of view of ME/CFS patients, the process of making a diagnosis and the recognition of ME/CFS as a neuroimmunological multisystem disease are the central aspects of a DP relationship that they experience as problematic. In the past, findings classified as “subjective” and thus ignored, the pigeonholing that is characteristic of biomedically oriented medicine and a healthcare system that opposes systemic thinking when making a diagnosis have all been identified as factors that may have a significant impact on the DP relationship.

Source: Habermann-Horstmeier L, Horstmeier LM. Systemisches Denken, subjektive Befunde und das diagnostische „Schubladendenken“ bei ME/CFS – Eine vorwiegend qualitative Public-Health-Studie aus Patientensicht [Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective]. Dtsch Med Wochenschr. 2023 Dec 14. German. doi: 10.1055/a-2197-6479. Epub ahead of print. PMID: 38096913. https://pubmed.ncbi.nlm.nih.gov/38096913/