Post-Covid & ME/CFS

Post-Covid and ME/CFS are two possible courses of Long-Covid, a consequence of infection with SARS-CoV-2, although other causes are discussed for ME/CFS too

• Direct link to Post-Covid Syndrom (overview, projects)
• Direct link to ME/CFS (overview, projects, events)

The term Long-COVID is an umbrella term to describe the overall burden of disease that can result from infection with SARS-CoV-2 in an individual: The personal burden of disease, the enormously reduced quality of life, and the socioeconomic impact at the population level to derive meaningful preventive measures. However, from a practical, diagnostical, therapeutical and scientific perspective, it is important to differentiate.

On the one hand, various disease mechanisms may underlie such as: Persistent viral reservoir, latent viral reactivation, microbiome dysbiosis, depletion of immune cell subsets and autoimmunity, which may lead to latent inflammatory responses, tissue dysfunction, hypercoagulative status, vascular damage, increased susceptibility to other infections, hormonal imbalance, neuroinflammation and mitochondrial dysfunction.

On the other hand, it can also be subdivided according to the following practical criteria as shown in the following publication:

• Hoffmann, K., Stingl, M., O’Mahony, L. et al. A Practical Approach to Tailor the Term Long COVID for Diagnostics, Therapy and Epidemiological Research for Improved Long COVID Patient Care. Infect Dis Ther (2024). https://doi.org/10.1007/s40121-024-01025-x

The group of Post-COVID sufferers often faces particular challenges in the health care system, as the underlying physiological dysfunctions are mostly not detectable by the standard diagnostic measures currently used. It has been previously noted that "[...] post-acute infectious syndrome with clear physiological dysfunction [...] often cannot be consistently detected by standard medical diagnostic tests. This discrepancy underscores the need for a new generation of more sensitive testing methods for people with post-acute infection syndrome.^{[Iwasaki & Putrino, 2023]}" Furthermore, there is as yet no causative therapy for this group of patients.

If post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE) occurs in the context of a Post-COVID syndrome and the symptomatology persists for longer than 6 months, ME/CFS should also be considered and diagnosed in accordance with the e.g. NICE-guideline. Research to date has shown that an estimated 1% of patients may develop ME/CFS following COVID-19 disease ^{[Komaroff AL and Bateman L,, 2021; Komaroff AL and Lipkin, 2023]}. Extrapolating this from available figures, up to 64,000 people in Austria may be affected with ME/CFS (SARS-CoV-2 infection figures as of June 2022, AGES) in addition to the existing 25,000 - 80,000 ME/CFS patients.

Manifest: Empfehlung zur Versorgung vom Menschen mit postakuten Infektionssyndromen (PAIS)

Frau Prof. Hoffmann hat als Arbeitsgruppenleiterin der Arbeitsgruppe des Obersten Sanitätsrates zum Thema spezifische Versorgungsstrukturen für Menschen mit postakuten Infektionssyndromen aus diesem Grund zusammen mit dem Arbeitsgruppenteam und Patient:innen-Organisationen ein Manifest erarbeitet, welches hoffentlich als Anstoß für die Schaffung von adäquaten Versorgungsstrukturen im Gesundheits- und Sozialwesen dient sowie auch zu passenden Rahmenbedingungen für Wissenschaft und Forschung führt. Das PDF des Manifestes kann auf Anfrage gerne geteilt werden.

Contact persons for this research focus

Univ.-Prof. Priv.-Doz. Dr. med. Kathryn Hoffmann, MPH

Email: kathryn.hoffmann@meduniwien.ac.at

Tel. (secretarial office): +43 (0)1 40160 34602

Publication list

Prevention

Since the only cause of Long-Covid and late damage caused by the SARS-CoV-2 is an infection with SARS-CoV-2, prevention of infection or reinfection is paramount.

Appropriate infection prevention measures for aerosol-borne pathogens in general are:

• clean and healthy indoor air through extensive ventilation, which is often not sufficient or practical, and therefore the additional use of air filtration systems. There are now already many good scientific studies on this and many countries around the world are making healthy indoor air a priority. In addition, it is advantageous to use CO2 sensors to make air quality visible as well. Clean and healthy indoor air not only reduces the incidence of aerosol-borne diseases, but also helps people to concentrate better, reduces the occurance of headaches and reduces additionally the burden of fine dust and pollen
• wearing FFP2 or FFP3 masks in places where there are many people and no healthy air
• an intelligent, socially-just and consistent test-trace-isolate strategy
• adapted vaccines

For this reason, Prof. Hoffmann is one of the physicians who co-authored and signed the open letter to the Austrian Medical Association, which has been initiated by Dr. med. Golda Schlaff: Öffentlicher Brief an Ärztekammer.pdf - Google Drive

In the meantime, the letter has been published in many media and shared very widely by colleagues (USA, Canada, England, Australia, Germany, Switzerland, Portugal, Spain, etc...). Even the well-known SARS-CoV-2 researcher Dr. Ziyad Al-Aly from St. Louis/USA found the letter exemplary and shared it. Many doctors abroad would like to take the letter as a template and write a similar letter in their home countries! The letter can be read in German and English under the following link, and it can also be signed by other physicians and health care professionals: https://covidisnotover.info/oeffentlicher-brief-an-aerztekammer/

Podcast zu Planetary Health: Auch hat Frau Prof. Hoffmann aktuelles zum Thema saubere Luft in Innenräumen im Podcast: https://planetary-health.podigee.io/3-new-episode besprochen und zusammengefasst.

In case you do get infected, which unfortunately is becoming more common due to the lack of preventive measures in Austria, here are important tips for essential care after SARS-CoV-2 infection:

Post-COVID syndrome

As mentioned above, to adequately diagnose Post-COVID syndrome and its concomitant diseases, more specific diagnostic tools are needed than current standard diagnostic procedures ^{[Iwasaki & Putrino, 2023]}.

Special attention should be paid to the presence of PEM/PESE. This point is so important, as the basic direction of therapy depends on it.

Here is a good overview of PEM/PESE and a link to a video podcast:

Examples of differential diagnostics in terms of differentiating between long-covid symptoms due to prolonged courses or organ damage due to the acute infection, worsening of existing diseases and late damage, and the post-infectious syndrome post-covid (with, among others, PEM, autonomic dysfunction, immune dysfunctions such as MCAS, cognitive dysfunction, and pain symptoms) can be found under the following three links to podcasts of ÖGAM:

• Long- /Post- COVID in Adults; kognitive Dysfunction in General Practice and Family Medicine: https://covid-19.infotalk.eu/20231227_kognitive_dysfunktionen
• Long- /Post- COVID in Adults; Cough/Dyspnea in General Practice and Family Medicine: https://covid-19.infotalk.eu/20230802longcovid_husten_dyspnoe
• Long-Covid in primary care - a case discussion: https://covid-19.infotalk.eu/20220907_long_covid_fallbesprechung

Projects

--> see also CovFIT study

--> Update Österreichische S1 Leitlinie Long-Covid jetzt unter dem Titel: "Leitlinie S1 für das Management postviraler Zustände am Beispiel Post-COVID-19", inklusive Webtool

--> Long-Covid und PAIS Forschung im Rahmen des europäischen Eurodata-Projekt

--> DACH-Konsensusstatement Gruppe zu ME/CFS: https://link.springer.com/article/10.1007/s00508-024-02372-y

Project: Assessing healthcare for patients with post-acute infection syndromes like ME/CFS (Care4PAIS&ME/CFS)

This study, sponsored by the WE&ME Foundation and conducted by the Medical University of Vienna, Department of Primary Care Medicine, in collaboration with the Universität Wien, Institut für Mathematik, and the ÖG ME/CFS, is groundbreaking for understanding and improving the medical pathway of patients suffering from post-acute infection syndromes (PAIS), such as ME/CFS or post-COVID. By using an advanced, patient-centered online questionnaire, the study examines with great depth and precision the spectrum of specific PAIS syndromes, such as post-exertional malaise, autonomic dysfunction, mast cell overactivity or cognitive dysfunction (instead of single, random symptoms usually collected in other PAIS and Long Covid studies), to then compare them with the symptoms described, the diagnostics performed and the therapy attempts. In addition, the study aims to evaluate these syndromes and symptoms in the context of the Canadian Consensus Criteria (CCC) for ME/CFS. This research is critical to advancing a deeper understanding and development of effective diagnostic pathways and interventions that are directly tailored to the specific syndromes and symptoms of PAIS and ME/CFS patients.

Teaching

Since 10.07.2023 there is a Moodle seminar for all interested students of Human Medicine and N790 at MedUni Vienna on the topic of Long-Covid, Post-Covid Syndrome and ME/CFS. In this seminar you will find information on definitions, risk factors and prevention options, epidemiology, symptoms, causes, diagnostics and treatment options. Self-registration via the following link with the password "LongCovid": https://moodle.meduniwien.ac.at/course/view.php?id=2221

In addition, there have been several courses on ME/CFS, PAIS and post-COVID syndrome at MedUni Vienna since 2021 on the initiative of Univ. Prof. Dr. Hoffmann and Assoc. Prof. DDr. Untersmayr-Elsenhuber, which are described in more detail on the corresponding MedUni Vienna pages:

- A lecture in the compulsory curriculum in the 5th year: Line "Interdisciplinary case discussions"
- A Moodle seminar in the KPJ general practice program
- A lecture in the PhD program

In addition, there is now also a chapter on post-acute infection syndromes and diseases in an official textbook for general practice, but ATTENTION: only in the eBook!

Hoffmann K. Post-acute infection syndromes and diseases, In: Zelko E et al. (eds.). Textbook for general/family medicine. EBook. Trauner Verlag; 2024. ISBN 978-3-99151-341-4 <link>

ME/CFS

Good and up-to-date information on the clinical picture of ME/CFS can be found in the document:

Interdisciplinary, collaborative D-A-CH consensus statement on the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome

The aim of this D-A-CH 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 diagnosis 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 diagnosis and treatment. The D-A-CH consensus statement is intended to support physicians, therapists and experts 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 presented questionnaires and other examination methods. The overview of the two pillars of therapy for ME/CFS, pacing and the symptom-relieving therapy options, should not only serve as orientation for physicians and therapists, but also support decision-makers from health 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".

Further information on ME/CFS can be found at the following link:

Projects

Adults patients with severe and very severe ME/CFS in Austria. A multi-perspective study.

Fördergeber: Wiener Wissenschafts-, Forschungs- und Technologiefonds (WWTF)

Projektnummer: ME-CFS24-001

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe, chronic illness that leaves many patients extremely debilitated. About 25% of those with ME/CFS are severely or very severely affected and would need extensive home-based care and treatment. These individuals deal with intense symptoms, frequent complications, and insufficient
access to proper medical and nursing care. Despite their significant needs, research on these severely affected patients is nearly non-existent.
This study aims to explore the specific experiences and needs of these patients and their caregivers, focusing on identifying early signs of symptom worsening. By conducting special interviews with patients, family caregivers, nurses, and physicians, the study seeks to gather comprehensive insights. The goal is to use these findings to recommend better care strategies for patients, including telemonitoring and high-level home care solutions, and support their caregivers more effectively.

Detailed information here.

Project Care for ME/CFS

The project Care for ME/CFS aims to develop practice guidelines to facilitate needs-based and evidence-informed care for people affected by ME/CFS.

The focus is on the topics:

• Diagnosis
• Treatment/Care
• Design of contact points

As first result you find here the practical guideline for ME/CFS: Ergebnis finden sie hier die Praxisleitfäden zu ME/CFS

Fortbildungen und Symposien zu ME/CFS