Biomedical Research Program Approved
Petition: Insurers, reimburse our care
Donation to the Open Medicine Foundation
New ME guideline
Biomedical Research Program Approved
Over the years we have kept you informed about the citizens’ initiative Erken ME als Biomedische Ziekte (Recognize ME as a Biomedical Disease), which was started in 2011. This led to an advisory report from the Health Council to the parliament in March 2018. One of the four recommendations was to have ZonMw carry out a long-term ME/CFS research program.
The Ministry of Health, Welfare and Sport subsequently decided to give that assignment to ZonMw – a semi-governmental institution – in early 2019. ZonMw then formed a steering committee with four patient representatives and four scientists. That came up with the final text for a research agenda in December.
The research agenda was presented to the Minister of Medical Care and Sport (VWS) at the end of December 2020, who sent it to the House of Representatives in March 2021.
In her letter to the House of Representatives on March 23, 2021, the Minister announced her intention to commission ZonMw for a biomedical research agenda for ME/CFS. This will be a biomedical program with a duration of 10 years and a budget of € 28.5 million.
In the program fundamental, epidemiological and clinical research into the causes, diagnosis and treatment of ME/CFS should play an important role. In addition to these 3 lines of research, there should also be room for practical and applicable research that should improve the situation and treatment of patients in the short term.
The research program has been launched on December 16, 2021. More about this in the section Authorities.
Petition: Insurers, reimburse our care
The 3rd recommendation in the Health Council report concerned the Dutch Federation of University Medical Centers (NFU) and the national health insurers. It states: “The committee is convinced that it is possible to raise the quality of care for patients with ME/CFS to a higher level, even if major scientific breakthroughs have yet to occur… The basis of good treatment is a good diagnostic examination that instills confidence in the patient: a thorough medical examination, including a comprehensive and detailed history, and additional investigations.”
Despite this, care provided by the only 2 centers specializing in ME in the Netherlands is barely, if at all, insured by health insurance companies. For 2022, one of them, DSW, cancelled the contract with the Cardiozorg Foundation.
As a result, Millions Missing Holland and ME Centraal started a petition to all health insurers in the Netherlands. You can find it under the petitions in this issue. Everyone from all over the world can sign this petition. It will certainly run through much of 2022.
Donation to the Open Medicine Foundation
The ME/cvs Vereniging collected donations for OMF-funded research and, as part of Triple Giving Tuesday, transferred € 4,475 at the end of November. That means tripled € 13,425 for biomedical research.
New ME guideline
On behalf of three patient organizations, the Steungroep ME en Arbeidsongeschiktheid reported in September that the development of a new ME/CFS guideline by Zorginstituut Nederland (ZIN) had been delayed. This is because it is expected that ZIN will largely base a new Dutch guideline on the new NICE guideline. Publication of the NICE guideline was postponed until 29 October.
In addition, ZIN will also allow the development of a new guideline to depend on the willingness of healthcare providers and users to agree on a new guideline.
Among Dutch healthcare professionals, there has also historically been a close association with the British Royal Colleges, particularly the Royal College of Psychiatrists, in the area of the psychological interpretation of ME.
It is therefore realistic not to expect an early new guideline in the Netherlands, now that the British Royal colleges have expressed their disdain for the new NICE guideline.
Submitted by Rob Wijbenga
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