EMEA News Q4 2021

EMEA Netherlands - Brain and health higher on the agenda

On Thursday, September 30, 2021, the Manifesto Hoofzaken was presented to Queen Maxima of the Netherlands.

EMEA Netherlands - The ME/CFS Foundation - is one of the signatories to this manifesto of the Brain Foundation , Mind Foundation and ZonMw .

In this this manifesto is that all parties involved are calling for coherent scientific research and innovation in healthcare.
The aim is to reduce the number of patients with a (chronic) disorder involving the brain.

More details available at this link - https://mecvs.nl/nieuws/manifest-hoofdzaken

Here is a report from the meeting by Otto Albrecht from ME/CVS Stichting Nederland

The ME/CFS Foundation Netherlands (ME/CVS Stichting Netherlands) is happy to share the following Dutch initiative.
EMEA is a member of the European Federation of Neurological Associations (EFNA) and EFNA was also involved in this Dutch initiative and was present at the event with an own stand.

The president of EFNA attended the meeting.

The ME/CFS Foundation Netherlands is one of the signatories of the “Dutch Brain Matters Manifesto”.
We supported this initiative as it encouraged researchers of all kinds of specializations such as neuroscientists, epidemiologists, geneticists, microbiologists, psychiatrics, psychologists, etc. to work together and exchange experiences and knowledge.
Many brain related and neurological deceases like Alzheimer’s, Autism, Acquired Brain Damage and ME/CFS have a lot of common causes and can/must be researched in relation to each other. F.i. certain common genetic factors can cause a variety of brain/neurological diseases.

It is the ambition of this coalition of patient organizations, brain research funders (o.a. others from The Netherlands, Canada and USA) and a large variety of medical researchers to set up a 10 year program with a budget of 250 million euro (most of it from the Dutch government). This is on top of the already grated 28,5 million for specific research for ME/CFS.

Here you find the translation of the press release (and photo’s) issued by the Dutch Royal House on this matter:

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Her Majesty Queen Máxima will be present on Thursday morning, September 30, at the launch of the “Brain Matters Manifesto” in De Remise in The Hague. The manifesto is an initiative of the Brain Foundation, MIND and ZonMw in which they advocate setting up a national knowledge and innovation program for brain and/or psychological health. The aim is to promote collaboration between disciplines such as psychiatry, psychology and neurology to improve the quality of research and care.

In the Netherlands, one in four people has a brain and/or psychological disorder. These include mental disorders, non-congenital brain injuries, chronic brain disorders that have developed gradually, such as dementia, sleep disorders and brain disorders such as a mental handicap that manifest themselves in the first year of life. The disorders have a major impact on the daily lives of people and their immediate environment. In addition, twenty percent of all annual deaths in the Netherlands are related to a serious brain disorder. Treatment options for patients are limited. This is partly due to a lack of medical evidence. The healthcare costs amount to more than 25 billion euros annually. That is more than a quarter of all healthcare costs in the Netherlands. These are expected to increase further (RIVM study 2017 commissioned by the Brain Foundation).

Queen Máxima is at the presentation of the manifesto that describes three priorities. Firstly, the initiators want better prevention and more effective treatment methods for the patient. To this end, patients and people in their immediate environment must be involved in scientific research. The second point is the bundling of existing and new knowledge about the disorders. This can be done by stimulating research, developing new techniques for precision medicine and lifestyle interventions. Thirdly, the disciplines and organizations involved must start sharing knowledge and data with each other and building networks. The priorities are explained on the basis of practical examples by professors and experts from, among others, psychiatry, neurology, brain research and clinical genetics. There is also a discussion with the three initiators about the reason and the future ambitions. At the end of this conversation, Queen Máxima is presented with the Main Matters Manifesto.

After the plenary programme, Queen Máxima will have three roundtable discussions with professors, psychiatrists, scientists and patients, among others, about their experiences with care and treatment methods, research and their vision of the manifesto. The visit ends with a short walk on the Innovation Market. There, scientists show how they work together from the various disciplines.