Review Interdisciplinary, collaborative D-A-CH consensus statement concerning the diagnostic and treatment of ME/CFS, 2024, Hoffmann et al [German]

https://link.springer.com/article/10.1007/s00508-024-02372-y

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

• Consensus paper
• Open access
• Published: 14 May 2024

• Volume 136, pages 103–123, (2024)

• 
  

Summary

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.


Zusammenfassung
Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom (ME/CFS) ist eine schwere, chronische Multisystemerkrankung, die je nach Ausprägung zu erheblichen körperlichen und kognitiven Einschränkungen, zum Verlust der Arbeitsfähigkeit bis hin zur Pflegebedürftigkeit einschließlich künstlicher Ernährung und in sehr schweren Fällen sogar zum Tod führen kann. Das Ziel dieses D-A-CH-Konsensusstatements ist es, 1) den aktuellen Wissensstand zu ME/CFS zusammenzufassen, 2) in der Diagnostik die kanadischen Konsensuskriterien (CCC) als klinische Kriterien mit Fokus auf das Leitsymptom post-exertionelle Malaise (PEM) hervorzuheben und 3) vor allem im Hinblick auf Diagnostik und Therapie einen Überblick über aktuelle Optionen und mögliche zukünftige Entwicklungen aufzuzeigen. Das D-A-CH-Konsensusstatement soll Ärzt:innen, Therapeut:innen und Gutachter:innen dabei unterstützen, Patient:innen mit Verdacht auf ME/CFS mittels adäquater Anamnese und klinisch-physikalischen Untersuchungen sowie der empfohlenen klinischen CCC zu diagnostizieren und dabei die präsentierten Fragebögen sowie die weiteren Untersuchungsmethoden zu nutzen. Der Überblick über die zwei Säulen der Therapie bei ME/CFS, Pacing und die symptomlindernden Therapieoptionen sollen nicht nur Ärzt:innen und Therapeut:innen zur Orientierung dienen, sondern auch Entscheidungsträger:innen aus der Gesundheitspolitik und den Versicherungen darin unterstützen, welche Therapieoptionen bereits zu diesem Zeitpunkt bei der Indikation „ME/CFS“ von diesen erstattbar sein sollten.




Hoffmann, K., Hainzl, A., Stingl, M. et al. Interdisciplinary, collaborative D-A-CH consensus statement on the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome. Vienna Klin Wochenschr 136 (Suppl 5), 103–123 (2024). https://doi.org/10.1007/s00508-024-02372-y

 

Some translated quotes:

In the distinction from other diseases, the leading symptom of ME/CFS, post-exertional malaise (PEM), is of decisive importance. It is absolutely necessary for the diagnosis [6]

…

Secondary - mainly due to the lack and/or incorrect medical care, stigmatization, social isolation and lack of social security - trauma or a depressive reaction can develop in ME/CFS-affected people up to increased suicidality [68,69,70]. ME/CFS patients should be treated in the best possible way in a symptom-oriented way, depending on the severity of the disease. All measures must be adapted to the PEM and the associated risks. This also applies to comorbidities in this regard. Basically, the principle of "pacing first" (see below) applies here, which is subordinate to the use of mobilizing techniques in psychotherapy and rehabilitation. In addition, the dosages of the drugs as well as the time of medication intake must be matched to ME/CFS. ME/CFS affected partly already react to low doses [6, 71].

…

About 25% of those affected are tied to the house or bed [56]. Severely affected pers must be shielded from all stimuli and are completely in need of care - up to artificial nutrition [142]. The burden of the disease is so high that the average quality of life of the patients is lower than with other serious and highly limiting diseases such as MS, cystic fibrosis, diabetes mellitus, epilepsy, AIDS or cancer [143, 144]

…

Psychotherapy has only supporting significance for ME/CFS and is carried out without curative objectives. Gradually activating elements are harmful and can worsen the condition in the long term and irreversibly [2, 23, 26, 33, 36,37, 101, 141].

…

So far, there is no curative treatment for ME/CFS confirmed by high-quality scientific studies, which is probably also due to insufficient financial support for clinical research on a global level [6, 157]. For this reason, prevention with regard to (re)infection with the most common pathogens in the D-A-CH region, such as SARS-CoV-2, influenza and Epstein-Barr virus (EBV), would also be an important factor.

…

However, pacing in ME/CFS patients with a very high degree of severity can hardly be implemented or not at all, as even basic and vital activities such as eating or minimal movements can lead to a deterioration of the condition.

It is expressly not a goal of pacing to gradually increase or expand the performance limits, as is the goal of activating approaches. Accordingly, e.g. B. Treatments in rehabilitation clinics with activation therapies, which are based on gradually increased exercise requirements as a therapeutic means and are proven for other chronic diseases, not compatible with ME/CFS.

…

However, in addition to the general risks, in addition to the general risks, all invasive measures must be borne in mind that the state of health of the patients can also deteriorate due to a PEM triggered by this. This also applies if the measure has been successfully applied. Studies must also be considered with regard to whether the implementation takes into account the special needs of this patient group (e.g. B. with regard to load, single room, noise and light sensitivity).

ME/CFS research is dramatically underfunded internationally in view of the high number of people affected and the significant burden of disease [173, 174]. Previous research initiatives have been made possible mainly by private funds and foundations. Further research is urgently needed, which is e.g. B. engaged in identifying easily measurable indicators and therapy options. Cross-border cooperation of the research institutions would make sense here, in which all researchers base and apply uniform diagnostic standards and a uniform distinction of ME/CFS degrees of severity.

…

From the experience and surveys of the ÖG ME/CFS among those affected, long-term court proceedings are necessary in most cases for the recognition of the severity and complexity of ME/CFS and the associated restrictions - often without success. In many cases, the diagnosis of ME/CFS is not transferred to social law reports or ME/CFS is converted into diagnoses that are in the field of mental illness. In these cases, those affected may be entitled to support, but in the case of a classification by means of a psychological diagnosis, this is associated with conditions that harm the condition of those affected. In addition to the lack of medical care, the situation of those affected is therefore frighteningly bad in terms of livelihood and social security.

 

Really impressed by this piece.

Given it’s published in a Viennese journal, I’m suspicious WE&ME have something to do with it. Hope this will lead to some change

 

I don’t know unfortunately. Looking at the author list it seems majoritarily Austrian with a couple of Swiss and Germans in too.

In the case of Switzerland, we do not have national guidelines for ME/CFS (nor is it even a recognised condition) so I don’t know if this could lead to change in that regard or not…

 

It at least includes all the author institutions:

Link to full computer translated article

 

So refreshing too see they have authors from many patient organisations.

 

Looks pretty good to me. What a contrast to the clusterfuck of changing a few words and there in Australia, which really stands like a sore thumb in a recent string of guidelines and clinical recommendations like this, which actually bother to make sense of reality.