German Report ‘ME/CFS: The current state of knowledge’ released

The Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG)), which is responsible for examining the benefits and harms of medical interventions for patients in Germany, has released a report on ME/CFS.

The 15th May 2023 Press Release reported on the outcome of IQWiG’s deliberations – the body having been commissioned by the German Federal Ministry of Health to review the current scientific state of knowledge on ME/CFS.

The Report covers 4 areas

  • a systematic presentation of the current state of knowledge about ME/CFS: symptoms, putative causes, epidemiological and health care aspects, as well as current diagnostic criteria .
  • evidence mapping, i.e. an overview of the evidence on health care-relevant treatment options for selected treatment goals.
  • benefit assessments of the two treatment interventions identified in the evidence mapping, i.e., where possible, the benefits and harms for patients with ME/CFS were determined and weighed against each other.
  • several health information texts that communicate the relevant knowledge in an easily understandable way which are available on IQWiG’s health information website.

It acknowledged that the first symptoms of ME/CFS have been observed by those affected after an infection or trauma but that the lack of a biomarker hampers a consistent diagnosis. Further, that as diagnostic criteria vary and evolve, consistency of diagnosis and recording of prevalence rates is impacted.

On treatment options, no new evidence was presented as part of the process and this led IQWiG to state that with 2 studies each – only cognative behavioural therapy (CBT) and graded exercise therapy (GET) showed “.. statistically significant effects compared to standard medical care.”

However, it must be stated that the Press Release continued in terms not in keeping with this generality.

For CGT, it reports ‘a hint of benefit in the short and medium term, for example in the outcomes of fatigue, return to school/work or feeling ill after exertion. No longer-term data are available.”

Our results make it clear that CBT cannot cure the illness. But it is an option, especially for patients with milder illness, to help them cope a lettle better with their situation.”

Daniel Fleer, Divisional Head of IQWiG’s Dept. of Non-drug Interventions

For GET, the studies reported improvements were deemed to be “statistically significant, but on average only small advantages over standard treatment for several patient-relevant outcomes … The clinical relevance of most of the activation effects remains questionable.”

And, in realtion to reported harms of GET

.. it is currently not possible to reliably weigh benefits and harms of GET for people with people with mild to moderate illness. there is also a lack of suitable study data for patients with more severe ME/CFS.

IQWiG’s health information website has been trialed for ease of accessibility and comprehension; will be updated regularly; and altered to highlight the centrality of post exertional malaise (PEM) as the core symptom of ME/CFS.

In summation and on wider matters, Daniel Fleer opined that

There is also an urgent need for an international consensus on diagnostic criteria, with diagnostic parameters that are as clear as possible. On this basis, research efforts to clarify the aetiology of ME/CFS, as well as to determine the type of treatment and care required, should be intensified. There is insufficient interdisciplinary research in all these areas.

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