Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a syndrome of unknown etiology characterized by profound fatigue exacerbated by physical activity, also known as post-exertional malaise (PEM). Previously, we did not detect evidence of immune dysregulation or virus reactivation outside of PEM periods. Here we sought to determine whether cardiopulmonary exercise stress testing of ME/CFS patients could trigger such changes. ME/CFS patients (n = 14) and matched sedentary controls (n = 11) were subjected to cardiopulmonary exercise on 2 consecutive days and followed up to 7 days post-exercise, and longitudinal whole blood samples analyzed by RNA-seq. Although ME/CFS patients showed significant worsening of symptoms following exercise versus controls, with 8 of 14 ME/CFS patients showing reduced oxygen consumption () on day 2, transcriptome analysis yielded only 6 differentially expressed gene (DEG) candidates when comparing ME/CFS patients to controls across all time points. None of the DEGs were related to immune signaling, and no DEGs were found in ME/CFS patients before and after exercise. Virome composition (P = 0.746 by chi-square test) and number of viral reads (P = 0.098 by paired t-test) were not significantly associated with PEM. These observations do not support transcriptionally-mediated immune cell dysregulation or viral reactivation in ME/CFS patients during symptomatic PEM episodes.
Background
Facilitating communication between adolescents and HCP outside of appointments may enhance patient experience and outcomes. The purpose of this study was to determine whether SMS enhances the healthcare experience, QoL, and medication adherence in adolescent SOT patients.
Methods
This was a prospective observational study of an SMS platform (WelTel Inc) for SOT patients aged 12–19 years. QoL was assessed before and after using the PedsQL™ Transplant Module. Medication adherence was assessed with the frequency of therapeutic tacrolimus levels and variation based on control chart analysis. Patient experience and engagement was evaluated with surveys, response rate to messages, and number of clinical conversations (>2 messages).
Results
Twenty‐three patients were included (median age 15.7 years (IQR 13.6–17.1)). Median intervention duration was 13.5 months (range 4.0–16.7 months). There was a 68% response rate (742/1095) with 375 clinical conversations. The majority of patients reported the intervention provided a positive outlook on their health (17/23), was useful (18/23), and improved their connection to HCPs (17/23). Following the intervention, there was no significant difference in the median scaled QoL scores (pre‐intervention: 81 (IQR 76.5–93.3), post‐intervention: 78 (IQR 76–93); p = .37), mean percentage of therapeutic tacrolimus levels (pre‐intervention: 52 ± 25%, post‐intervention: 65 ± 17%; p = .07), or variation on control chart analysis of tacrolimus levels.
Conclusions
The WelTel messaging platform provided supplemental clinical care for a group of adolescent SOT patients that enhanced their healthcare experience. Patient QoL and adherence were unchanged following the intervention and remained at a high level.
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