Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no known effective FDA-approved treatments for either condition, patient-reported outcomes of treatments may prove helpful in identifying management strategies that can improve patient care and generate new avenues for research. Here, we present the results of an ME/CFS and long COVID treatment survey with responses from 3,925 patients. We assess the experiences of these patients with more than 150 treatments in conjunction with their demographics, symptoms, and comorbidities. Treatments with the greatest perceived benefits are identified. Patients with each condition who participated in the study shared similar symptom profiles, including all the core symptoms of ME/CFS, e.g., 89.7% of ME/CFS and 79.4% of long COVID reported postexertional malaise (PEM). Furthermore, treatment responses between these two patient groups were significantly correlated (R 2 = 0.68). Patient subgroups, characterized by distinct symptom profiles and comorbidities, exhibited increased responses to specific treatments, e.g., a POTS-dominant cluster benefiting from autonomic modulators and a cognitive-dysfunction cluster from CNS stimulants. This study underscores the symptomatic and therapeutic similarities between ME/CFS and long COVID and highlights the commonalities and nuanced complexities of infection-associated chronic diseases and related conditions. While this study does not provide recommendations for specific therapies, in the absence of approved treatments, insights from patient-reported experiences provide urgently needed real-world evidence for developing targeted patient care therapies and future clinical trials.
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID
Viral and infectious illnesses can exert profound and enduring effects on population health and well-being. In the aftermath of SARS-CoV-2 infection, post-acute sequelae, collectively referred to as Long COVID, have emerged as a major global health challenge, affecting more than 400 million people and contributing to estimated annual economic costs exceeding $1 trillion. Long COVID encompasses a wide and heterogeneous spectrum of debilitating symptoms, including cognitive dysfunction, sleep disturbances, severe fatigue, and post-exertional malaise. Despite its substantial burden, fundamental uncertainties remain regarding its underlying pathophysiology, the development of robust diagnostic criteria, and the identification of effective therapeutic options. This review synthesises current evidence on the biological mechanisms thought to contribute to Long COVID, spanning immune dysregulation, viral persistence, autonomic dysfunction, microvascular pathology, and other emerging hypotheses. We examine advances and limitations in contemporary diagnostic approaches and critically appraise existing treatment strategies, highlighting inconsistencies and gaps that hinder clinical consensus. By integrating interdisciplinary insights, this review underscores the urgent need for mechanistic clarity, validated diagnostic frameworks, and rigorously evaluated treatment pathways. Addressing these gaps will be essential to developing effective, evidence-based management strategies and mitigating the long-term impact of Long COVID on global health.
Current status and future perspectives on the mechanistic and pathophysiological understanding of long COVID
Viral and infectious illnesses can exert profound and enduring effects on population health and well-being. In the aftermath of SARS-CoV-2 infection, post-acute sequelae, collectively referred to as Long COVID, have emerged as a major global health challenge, affecting more than 400 million people and contributing to estimated annual economic costs exceeding $1 trillion. Long COVID encompasses a wide and heterogeneous spectrum of debilitating symptoms, including cognitive dysfunction, sleep disturbances, severe fatigue, and post-exertional malaise. Despite its substantial burden, fundamental uncertainties remain regarding its underlying pathophysiology, the development of robust diagnostic criteria, and the identification of effective therapeutic options. This review synthesises current evidence on the biological mechanisms thought to contribute to Long COVID, spanning immune dysregulation, viral persistence, autonomic dysfunction, microvascular pathology, and other emerging hypotheses. We examine advances and limitations in contemporary diagnostic approaches and critically appraise existing treatment strategies, highlighting inconsistencies and gaps that hinder clinical consensus. By integrating interdisciplinary insights, this review underscores the urgent need for mechanistic clarity, validated diagnostic frameworks, and rigorously evaluated treatment pathways. Addressing these gaps will be essential to developing effective, evidence-based management strategies and mitigating the long-term impact of Long COVID on global health.
Researchers link Long COVID to another virus | NHK WORLD-JAPAN News
Researchers in Japan have released findings showing that COVID-19 after effects, including fatigue, occur when a coronavirus infection activates another virus already inside the body.
Post-exertional malaise (PEM) in ME/CFS
Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is particularly debilitating as it involves the amplification of existing symptoms, alongside the potential appearance of new ones, following minimal exertion. However, the term “exertion” may be misconstrued, by those unfamiliar with ME/CFS, as activities typically considered high intensity by healthy individuals. Consequently, healthy individuals may inappropriately…
Patient Led Research Collaborative for Long COVID
About the Patient-Generated Hypotheses JournalPatient-Led Research Collaborative
Patient Led Research Collaborative for Long COVID
About the Patient-Generated Hypotheses JournalPatient-Led Research Collaborative
Evidence mounts that Long Covid is damaging the hearts of those affected
There are also increasing signs that the condition can disrupt the autonomic nervous system
COVID-19 Vaccine Effectiveness and Safety for the 2026-2027 Respiratory Season
Importance SARS-CoV-2 remains a substantial cause of respiratory illness, morbidity, and mortality. Evidence to date has demonstrated that COVID-19 vaccines reduce the risk of severe disease, including hospitalization and death. Objective This systematic review identifies and summarizes newly published studies reporting on the effectiveness and safety of COVID-19 vaccines and COVID-19 epidemiology in the US. Evidence Review Cochrane Central Register of Controlled Trials, PubMed/MEDLINE, Embase, and Scopus were searched from August 1, 2025, through June 29, 2026. Studies were eligible if they reported on the effectiveness, efficacy, or safety of a US-licensed COVID-19 vaccine or SARS-CoV-2 epidemiology in the US. Findings From 11 829 identified references, 155 publications were eligible (15 randomized clinical trials, 84 observational studies with a comparator group, 38 product safety studies without a comparator group [single group], and 18 descriptive studies of disease burden). Consistent with prior evidence, studies reported that updated COVID-19 vaccines were associated with a reduction in the risk of hospitalization among both older adults (≥65 years; vaccine effectiveness [VE], 53.0%; 95% CI, 37.0%-65.0%; 2025-2026 season) and adults (18-64 years; VE, 54.0%; 95% CI, 1.0%-78.0%; 2024-2025 season). Maternal vaccination was associated with reduced risk of COVID-19–associated emergency department/urgent care encounters among individuals vaccinated (VE, 58.0%; 95% CI, 24.0%-77.0%) and with fewer COVID-19–related hospital contacts in the first 2 months of life among infants born subsequently (VE range, 50.0%-54.0%), regardless of trimester of vaccination. Vaccination was also associated with a significant reduction in COVID-19–related pediatric emergency department visits (9 months to 4 years; VE, 76.0%; 95% CI, 58.0%-87.0%). Vaccination was associated with a reduced risk of critical COVID-19 illness (intensive care unit admission or death) in immunocompromised adults (VE range, 32.0%-53.0%, depending on condition and other factors). Health care personnel who received 3 to 5 vaccine doses were less likely to develop laboratory-confirmed COVID-19 illness (VE, 41.0%; 95% CI, 34.0%-47.0%) and postacute COVID-19 symptoms (VE, 57.0%; 95% CI, 46.0%-66.0%) compared with those who received only 2 doses. Across adverse events of special interest (eg, stroke, thrombosis, myocarditis), safety profiles were consistent with those of previous reviews. No identified studies conducted under the updated guidance on extended dosing intervals for the primary series reported an increased risk of myocarditis or pericarditis. No new safety signals were reported in the recently published studies eligible for this updated review of US-licensed COVID-19 vaccines. Conclusions and Relevance COVID-19 vaccines were consistently associated with a reduction in the risk of hospitalization and other outcomes, including among individuals at high risk of severe COVID-19, such as infants, and those who were pregnant. No new safety concerns were identified.
Underlying Conditions and the Higher Risk for Severe COVID-19
Learn risk factors for severe outcomes from COVID-19 and actions to take.
Long-term maintenance treatment with 300 mg thiamine for fatigue in patients with inflammatory bowel disease: results from an open-label extension of the TARIF study
OBJECTIVE AND AIMS: Fatigue is common in inflammatory bowel disease (IBD). In a RCT we demonstrated reductions in fatigue after 4 weeks' treatment with high-dose oral thiamine. We aimed to investigate whether 300 mg thiamine daily for 12 weeks could maintain the achieved levels of fatigue in patients with IBD after a 4-week intervention with high-dose thiamine; and evaluate the effect of a 6-month period where patients were free to take oral thiamine. METHODS: A randomised, open-label, controlled trial, performed as a long-term extension (LTE) study of an initial randomised, high-dose thiamine trial. Patients were allocated 1:1 to 300 mg oral thiamine or no thiamine for 12 weeks. Subsequently, the patients were allowed to self-treat with over-the-counter (OTC) oral thiamine 6-month. RESULTS: Regardless of allocation in the LTE study fatigue severity increased in the study period. No significant effect of 300 mg oral thiamine were found, when stratifying for initial allocation in the high-dose study or fatigue level at entry in the LTE study. Patients who took OTC thiamine had lower level of fatigue 6 month later (7.8; 95% CI: 5.5-10.1) when compared to the remains (11.0; 95% CI: 9.2-12.8) (p = .02). After the 6-months follow-up without restrictions, 66% of patients had reached normal fatigue levels. CONCLUSIONS: We found no beneficial effect on fatigue from thiamine taken in doses of 300 mg per day for 12 weeks following high-dose treatment. After a 6-months follow-up without restrictions 66% had reached a normal level of fatigue. CLINICAL TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov under study identifier NCT03634735.
Fact Sheet 3: ME/CFS: Information for Medical Professionals
Fact Sheet 3: ME/CFS: Information for Medical Professionals Published December 2025 Link to pdf: ME/CFS: Information for Medical Professionals.pdf Discussion thread: Fact sheet #3: Information...
Co-creation process of an app for people with rare diseases - a citizen science approach
Background Rare diseases affect a small percentage of the population, leading to challenges such as delayed diagnoses and limited treatment options. Mobile health technologies offer solutions to improve patient outcomes, yet their application in rare diseases remains underexplored. The German citizen science project SelEe created a customizable app for the self-management of rare diseases through a co-creation process that involved patients with such conditions. Methods The project consisted of three phases. In Phase 1, 9 to 68 patients or relatives of patients participated in workshops to define research topics and app requirements. Phase 2 involved a core research team of nine patients and researchers who iteratively developed the app, released in March 2023. Phase 3 focused on evaluating the app’s usage and usability through an in-app survey conducted from March 2023 to February 2024. We utilized descriptive statistics to evaluate app usage and employed the mHealth App Usability Questionnaire to assess usability. Results The SelEe app offers the possibility to create and store data in a personalized health diary. Patients can create their own templates or use templates which were defined by the core research team. Users can record findings (e.g. blood test results) and export data using different graphs and formats. Furthermore, the app supports blind users. The app was downloaded 3040 times and 1456 users registered, with 1967 unique diseases entered. 50.7% of the diseases were rare, 30.5% non-rare, and 18.8% were classified as suspected, undefined, or symptoms. A total of 1223 valid user profiles were analyzed for app usage and demographics. Furthermore, 432 users qualified for the in-app survey by making at least one health diary entry, and 117 participated. The app was rated with an overall usability score of 5.19 out of 7. While the app’s health diary function was frequently used, other functionalities like findings and data export were less utilized. Feedback highlighted the need for improved usability and additional features. Conclusions The study highlights active patient engagement in developing a mobile health app for individuals with rare diseases. Although improvements are necessary for broader acceptance, the app is promising for the management of rare diseases. Supplementary information The online version contains supplementary material available at 10.1186/s13023-025-04140-1.
What Patients Say Works (And Doesn't) for Migraines
For the live-updated, fully-labelled, interactive version of this infographic, click here. Eight of the top ten patient-reported treatments for Migraine are simple lifestyle changes, not drugs. CureTogether – a free resource owned by 23andMe that allows people to share information about their health and treatments – surveyed more than 6,000 people who self-identify as having […]
ChatGPT Health performance in a structured test of triage recommendations
ChatGPT Health was launched in January 2026 as OpenAI’s consumer health tool and has reached millions of users. Here we conducted a structured stress test of triage recommendations using 60 clinician-authored vignettes across 21 clinical domains under 16 factorial conditions, yielding 960 total responses. Performance followed an inverted U-shaped pattern, with the most dangerous failures concentrated at clinical extremes—nonurgent presentations (35%) and emergency conditions (48%). Among gold-standard emergencies, the system undertriaged 52% of cases, directing patients with diabetic ketoacidosis or impending respiratory failure to 24–48 h evaluation rather than the emergency department, while correctly triaging classical emergencies such as stroke and anaphylaxis. When family or friends minimized symptoms, indicating anchoring bias, triage recommendations shifted significantly in edge cases (odds ratio = 11.7, 95% confidence interval = 3.7–36.6), with the majority of shifts toward less urgent care. Crisis-intervention messages activated unpredictably across suicidal ideation presentations, occurring more frequently when patients described no specific method than when they did. Patient race, sex and barriers to care did not show significant effects, although confidence intervals did not exclude clinically meaningful differences. These findings reveal missed high-risk emergencies and inconsistent activation of crisis safeguards, raising safety concerns that warrant prospective validation before consumer-scale deployment of artificial intelligence triage systems.
ChatGPT Health performance in a structured test of triage recommendations
ChatGPT Health was launched in January 2026 as OpenAI’s consumer health tool and has reached millions of users. Here we conducted a structured stress test of triage recommendations using 60 clinician-authored vignettes across 21 clinical domains under 16 factorial conditions, yielding 960 total responses. Performance followed an inverted U-shaped pattern, with the most dangerous failures concentrated at clinical extremes—nonurgent presentations (35%) and emergency conditions (48%). Among gold-standard emergencies, the system undertriaged 52% of cases, directing patients with diabetic ketoacidosis or impending respiratory failure to 24–48 h evaluation rather than the emergency department, while correctly triaging classical emergencies such as stroke and anaphylaxis. When family or friends minimized symptoms, indicating anchoring bias, triage recommendations shifted significantly in edge cases (odds ratio = 11.7, 95% confidence interval = 3.7–36.6), with the majority of shifts toward less urgent care. Crisis-intervention messages activated unpredictably across suicidal ideation presentations, occurring more frequently when patients described no specific method than when they did. Patient race, sex and barriers to care did not show significant effects, although confidence intervals did not exclude clinically meaningful differences. These findings reveal missed high-risk emergencies and inconsistent activation of crisis safeguards, raising safety concerns that warrant prospective validation before consumer-scale deployment of artificial intelligence triage systems.
Amy Deng on Twitter / X
I’m an AI researcher turned brain tumor patient, and recently I used the models to crack my mystery fatigue faster than my PCP could. I believe everyone can do the same with their own symptoms. Here’s how: pic.twitter.com/0jhbPvEi7V— Amy Deng (@amydeng_) June 16, 2026
