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Post-Covid & ME/CFS

Department of Primary Care Medicine
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


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 patients with:

  1. prolonged course of COVID-19,
  2. symptoms due to organ damage from acute SARS-CoV-2 infection,
  3. symptoms due to COVID-19 treatment (e.g. ventilation),
  4. symptoms due to worsening of existing/pre-acute/chronic/residual disease due to SARS-CoV-2 infection,
  5. symptoms due to new onset of disease from SARS-CoV-2 infection (e.g., thrombosis/embolism, stroke, cardiovascular disease, bronchial asthma, (atypical) pulmonary fibrosis, type I diabetes mellitus, dementing syndromes),
  6. symptoms due to the Post-COVID syndrome, which result from physiological dysfunctions post-viral, but cannot be explained by any of the above diagnoses in groups 1-5. 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 1-10% of patients may develop ME/CFS following COVID-19 disease [Komaroff AL and Bateman L,, 2021; Komaroff AL and Lipkin, 2023]. Although the exact relationship between the diseases is still unclear, there is a clear overlap of symptoms from Post-COVID-19 syndrome and ME/CFS. Extrapolating this from available figures, up to 64,000 people in Austria may be affected with Post-COVID-19 syndrome (as of June 2022, AGES) in addition to the existing 25,000 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 Rahmenbdingungen für Wissenschaft und Forschung. Das Manifest finden Sie hier.

Contact person 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

© Stokkete/Shutterstock.com

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: 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/

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

© magic_pictures/Shutterstock.com

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:

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

Diese Studie, die von der WE&ME Stiftung gesponsert und von der Medizinischen Universität Wien, Abteilung für Primary Care Medicine, in Zusammenarbeit mit der Universität Wien, Institut für Mathematik, und der ÖG ME/CFS durchgeführt wird, ist richtungsweisend für das Verständnis und die Verbesserung des medizinischen Weges von Patient:innen, die an postakuten Infektionssyndromen (PAIS), wie ME/CFS oder Post-COVID, leiden. Durch die Verwendung eines fortschrittlichen, patientenzentrierten Online-Fragebogens untersucht die Studie mit großer Tiefe und Präzision das Spektrum spezifischer PAIS-Syndrome, wie z. B. post-exertionelle Malaise, autonome Dysfunktionen, Mastzellüberaktivität oder kognitive Dysfunktion (anstelle einzelner, zufälliger Symptome, die normalerweise in anderen PAIS- und Long-Covid-Studien erhoben werden), um diese dann mit den beschriebenen Symptomen, der erfolgten Diagnostik und den Therapieversuchen zu vergleichen. Darüber hinaus zielt die Studie darauf ab, diese Syndrome und Symptome im Zusammenhang mit den kanadischen Konsenskriterien (CCC) für ME/CFS zu bewerten. Diese Forschung ist entscheidend für die Förderung eines tieferen Verständnisses und die Entwicklung wirksamer Diagnostikwege und Interventionen, die direkt auf die spezifischen Syndrome und Symptome von PAIS- und ME/CFS-Patient:innen zugeschnitten sind.

Teaching

From 10.07.2023 there will be a Moodle seminar for all interested students of the medical curriculum and N790 of the MedUni Vienna on the topic of Long-Covid and Post-Covid syndrome.

In this seminar you will find the latest information on definition, risk factors and prevention options, epidemiology, symptoms, causes, diagnostics and treatment options.

Registration by self-registration under the following link with the password "LongCovid":

https://moodle.meduniwien.ac.at/course/view.php?id=2221


ME/CFS

© REDPIXEL.PL/Shutterstock.com

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:

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

Care for ME/CFS

Hier finden Sie alle Informationen zum Projekt.

Fortbildungen und Symposien zu ME/CFS

NEU im Juni 2024: ME/CFS Symposium im Rahmen des Kongresses der Federation of European Neuroscience Societies (FENS)

Eine weitere hochkarätig bestetze Veranstaltung zum Thema ME/CFS im Rahmen einer internationalen Spitzenveranstaltung: Das FENS-Forum ist der größte neurowissenschaftliche Kongress Europas, der alle Bereiche der Neurowissenschaften von der Grundlagenforschung bis zur translationalen Forschung abdeckt.
Datum: 21. Juni 2024

International webinar on neurological aspects of ME/CFS and retrospective

Date: 1st of March 2024
Time: 15.00 - 18.40 pm (CET)/ 9.00 – 12.40 am (ET)
Language: English

Please register by informal e-mail with your full name and (if you are a physician from Austria) your ÖÄK-number at: veranstaltung@mecfs.at
After the registration, you will be sent the WebEx-link for the online webinar (one week before the event and as a reminder the day before again).

ME/CFS Symposium und Vernetzungstreffen für medizinisches Fachpersonal

Datum: 01.09.2023
Rückblick auf die sehr gelungene Veranstaltung und Programmübersicht