Thread on X by Johannes Rauch, Minister of Public Health of Austria
“We are improving the treatment of post-viral diseases like ME/CFS or LongCovid. At a meeting with ME/CFS sufferers today (17th January-ed.), I presented the next steps with which we are implementing the recommendations of the Supreme Medical Council.
The Europe-wide call for tenders for the National Reference Centre for Post-Viral Diseases will be issued at the beginning of February. It will act as a “knowledge hub”, conduct research & advise healthcare professionals on complicated cases. It will be decided in the summer who will run the centre.
In the spring, we will agree with the federal states how they can use the 600 million euros they receive from the financial equalisation for reforms. The care of people with post-viral syndromes is explicitly mentioned in the financial equalisation scheme.”
The Austrian ‘financial equalisation’ regulates the financial relationships between the federal government, federal states and municipalities. The revenue from certain levies collected by the federal government is divided between the federal government, the federal states and the municipalities via financial equalisation.
When a financial equalisation agreement is concluded, the tasks that each level has to take on and finance are also agreed. This is being agreed upon every four to six years, for the last time in the spring of last year.
“By the summer, we will develop an actionplan to further improve care for post-viral diseases. We will also involve those affected in this process in order to obtain good solutions that prove themselves in practice.
The treatment of post-viral diseases requires a differentiated and multi-stage diagnosis and treatment by general practitioners as the first point of contact, and specialists and specialised facilities. Optimal care is only possible if everyone works together.”
Johannes Rauch, Minister of Public Health of Austria since March 8, 2022 on Twitter on 17th of January https://twitter.com/johannes_rauch/status/1747536774870507711
ME/CFS Consensus meeting on April 19th
The Austrian Society of Neurology (ÖGN) invites you to an interdisciplinary “consensus conference” on April 19th on the topic of the multisystem disease ME/CFS. The aim is to create a “consensus statement” that is intended to offer “scientifically based recommendations for action” for those affected, doctors, decision-makers and the public, said the ÖGN in a statement to the APA. The patient organization ÖG MECFS has not yet received an invitation.
Post-viral infection syndromes such as Long or Post Covid, but also ME/CFS, are often misdiagnosed as mental illnesses.
According to the ÖGN, neurological experts from the fields of neuroinfectiology, neuroimmunology, autonomic dysfunction and pain as well as experts from other disciplines involved will take part – such as general medicine, allergology and immunology, internal medicine and psychiatry. Representatives of those affected and other stakeholders should also have a “broad, unbiased and objective discussion on the genesis, diagnosis and therapy of ME/CFS”.
No details available on the subject of the conference
In response to an APA request, the ÖGN did not want to comment in more detail on the subject of ME/CFS with reference to the conference. Most recently, experts such as Kathryn Hoffmann from the Center for Public Health at MedUni Vienna as well as practitioners from psychiatry and psychology pointed out that post-viral infection syndromes (PAIS) such as Long or Post Covid, but also ME/CFS, are often misdiagnosed as mental illnesses, which prevent adequate treatment. Incorrect treatments that are helpful for other illnesses such as depression would also cause severe damage in ME/CFS.
The ÖGN referred to the planned consensus meeting on the question of the extent to which ME/CFS has increased due to the corona pandemic and whether ME/CFS is also a topic at the current annual meeting of the ÖGN (March 13-15).
As a basis for the discussion, the ÖGN referred, among other things, to two articles published in the specialist journal “Dernervarzt”, which were written by ÖGN past president Thomas Berger, among others – as well as to the development of the S1 guideline on the management of post-viral conditions Example post-Covid-19, in which society was involved. As a scientific society for neurology, the ÖGN strives to evaluate current developments in the field taking into account scientific evidence, according to the statement.
The question of the extent to which psychosomatic aspects play a role in the illness will probably also be discussed at the consensus meeting. Organizations of those affected always complain that doctors and experts often classify their complaints as “mental”, which leads to incorrect treatment and also problems with treatment, rehabilitation or the assessment of their ability to work, for example by experts from the Pension Insurance Institute (PVA).
Review article criticized
The review article in the “Neurvenarzt” on ME/CFS mentioned by the ÖGN also states that so far “neither clearly causal nor therapeutically evidence-based results have been found in long-term scientific research ME/CFS”. And: “Not least because of the relevant psychiatric comorbidity rate in ME/CFS, based on the current data, a psychosomatic etiology of the disease needs to be discussed.”
The article received critical comments after its publication at the beginning of 2023, including in a letter to the editor in “Neurvenarzt” co-authored by the German ME/CFS specialist Carmen Scheibenbogen (Berliner Charité) and Kathryn Hoffmann: The statements would contradict the current evidence. The authors “do not present any evidence that ME/CFS is a psychosomatic illness,” according to the criticism.
The Austrian Society for ME/CFS (ÖG ME/CFS) has not yet been invited, as its chairman Kevin Thonhofer told the APA. “As an ME/CFS patient organization, we did not receive an invitation to the planned ÖGN consensus meeting and are therefore unfortunately not at the table as an important stakeholder,” he explained in a statement.
“We welcome all initiatives to improve medical care for ME/CFS patients,” said Thonhofer. “However, these must be based on clinical and scientific expertise on the disease. We have not yet seen this focus at the ÖGN, as shown, for example, by the lack of care for patients in relevant outpatient clinics or the current program of the ÖGN annual meeting.” The ÖG ME/CFS hopes “that the interest of the patients and a connection to international scientific findings on ME/CFS will be the focus”. It is also hoped that the patient organization will still be able to “fully participate – in accordance with our health restrictions”, Thonhofer also pointed out that taking part in a purely on-site conference is difficult for those affected by ME/CFS.
The WE&ME Foundation, founded by the Ströck bakery family (lead by two brothers Ströck, both with ME -ed.), was invited. However, WE&ME head Marie-Therese Burka told the APA that no response had yet been received when asked what agenda was being pursued at this meeting. When it comes to reaching a consensus, different directions and authorities must be represented, she emphasized. In any case, it would be important for all specialist societies, including neurology, to be present at such a meeting, “since it is a multisystem disease” and interdisciplinary work would be necessary.
The WE&ME Foundation held a so-called stakeholder conference on the topic of ME/CFS for the second time on Thursday (12th Match-ed.), as it announced in a press release. Those who took part included representatives from the health insurance fund, the City of Vienna and the MedUni Vienna. The self-help organization ÖG ME/CFS, the Pension Insurance Institute and the Vienna Medical Association were also represented.
The work process of the conference organized by the foundation is led by former Health Minister Rudolf Anschober, the broadcast said. In addition to the reference center for research work announced by the current Health Minister Johannes Rauch (Greens), the conference calls for high-quality primary care by practicing doctors as well as several competence centers for specialized care. From a social policy perspective, a reform of the so-called “Assessment Ordinance” is also called for, which is used to determine the degree of impairment of those affected – the aim here is to improve social security.
Source: Salzburger Nachrichten
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