The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium

Nice. Still a bit sceptical about Raaijmakers being involved in one of the 6 projects with his links to COFFI, but his program looks good on first glance. Let's hope the entire thing yields some results.

 

Report from ME/CFS Vereniging,

Kick-off symposium NMCB. A memorable event.

Dutch, https://me-cvsvereniging.nl/nieuws/kick-off-symposium-nmcb-een-gedenkwaardige-gebeurtenis/
Google translated English, https://1-me--cvsvereniging-nl.tran...=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

Another report on Start of Dutch ME/CFS Cohort and Biobank consortium
Google translate:

https://mecvs-nl.translate.goog/nie...sl=nl&_x_tr_tl=en&_x_tr_hl=fil&_x_tr_pto=wapp

 

I wouldn't promote those guys @Dolphin @Tom Kindlon , they're the wrongn's that have helped set up the ME Lines project of Judith Rosmalen and stuffed other charities in the process.

 

Recording of their Symposium from 21st Jan.

Presentations:
ME/CFS in Perspective | Professor Jonas Bergquist
UK ME/CFS Biobank: A Resource for International Research | Eliana Mattos Lacerda and Caroline Kingdon
The Netherlands ME/CFS Cohort and Biobank Consortium | Jos Bosch
Establishing a state-of-the-art biobank | Jörg Hamann NMCB

Subprojects:
A Biomedical Investigation of ME/CFS and PAIS | Ruud PH Raijmakers
EnergiseME | Niels Eijkelkamp
AutonoME | Jeroen den Dunnen
IMMUNESTRATIFY | Marjan Versnel
Brain changes in ME/CFS | Inge Huitinga
MuscleME | Rob Wüst

Patient Perspective | Laura de Vries

 

Video is now private for some reason.

 

Google-translation from Dutch to English,

https://herseninstituut-nl.translat...syndroom/?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

Dutch Brain Bank starts brain donor program for myalgic encephalomyelitis/chronic fatigue syndrome

Dutch Brain Bank starts brain donor program for myalgic encephalomyelitis/chronic fatigue syndrome

May 22, 2024

The Dutch Brain Bank is starting a brain donor program for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to make brain tissue available for research into ME/CFS.

ME/CFS is a chronic disease in which people become severely fatigued and do not recover from this. In fact, a relatively small effort only makes the complaints worse. The cause is unknown and the diagnosis of ME/CFS is complicated: there is no clear test to determine that someone has ME/CFS. Patients can therefore suffer from complaints for a long time, without an answer to what is wrong with them.

These complaints also include neurological symptoms, including dizziness, sudden drowsiness, memory and concentration problems. It is therefore very important to be able to look at the brain tissue of people with ME/CFS to see whether changes have occurred. This is currently not possible: there is simply no brain tissue from people with ME/CFS available for research worldwide. The Dutch Brain Bank wants to change that.

Dutch ME/CFS Cohort and Biobank Consortium
Thanks to a ZonMW grant, the Dutch ME/CFS Cohort and Biobank consortium ( NMCB ) has started. In this consortium, six projects will focus on biomedical research into ME/CFS. One of these projects is the Dutch Brain Bank for ME/CFS (NHB-ME/CFS): a new donor program specifically for ME/CFS with the aim of collecting brain tissue and making it available to researchers worldwide. That is why the Dutch Brain Bank calls on people with ME/CFS to pay attention to the possibility of registering as a brain donor. Currently, 20 people with ME/CFS are already registered with the Dutch Brain Bank. To make good research possible, there must be a lot more.

ME/CFS brain tissue for scientific research
Research with human tissue is one of the most effective methods to study and understand disease processes, because changes in cells and molecules become visible in this tissue. In recent years, research techniques have been further developed, allowing better and more accurate zooming in on this tissue.

Identifying what changes and goes wrong brings science one step closer to prevention and recovery. It is crucial to be able to compare the situation of an ME/CFS patient with the normal situation in healthy people. To achieve this, researchers also need access to healthy brain tissue: the 'control tissue' to compare the diseased tissue with. Brain donations from people without brain-related disease are therefore also essential.

Dutch Brain Bank
The brain tissue of ME/CFS patients and healthy controls is collected by the Dutch Brain Bank (NHB) . This is an internationally renowned, professional Brain Bank that provides well-characterized and documented brain tissue to researchers. The average time between death and brain removal is 6.5 hours. This is very short, making the tissue of high quality for research. Researchers all over the world therefore request tissue from the NHB for their research projects.

Brain donors register while alive for the use of their brain and medical data. Every year, the NHB registers around 200-300 new donors with and without various brain-related conditions. The NHB performs up to 150 brain autopsies per year and supplies approximately 6,000 pieces of tissue to more than 100 research projects.

Become a brain donor
More information about NHB-ME/CVS can be found here ( https://www.hersenbank.nl/nhb-mecvs/ ). Are you considering becoming a brain donor? You can request an information package with a registration form via this page ( www.hersenbank.nl/hersendonatie/registreren ). You will also find answers to some frequently asked questions here. If you have any other questions, you can always contact us. This can be done by emailing info@hersenbank.nl , or by calling 020 566 5499. On working days we have daily consultation hours from 9:30 am to 11:30 am. Outside office hours you can leave a voicemail message and we will call you back as soon as possible.

The Netherlands Brain Bank is part of the Netherlands Brain Institute , an institute of the Royal Netherlands Academy of Arts and Sciences (KNAW). The brain research into ME/CFS is also part of the Dutch ME/CFS Cohort and Biobank consortium (NMCB; https://nmcb.eu/)

 

Not using it, so why not .

On a more serious note, I will fill in the forms tomorrow. I'm not planning to die anytime soon, but if I do I'd want my body to be used to help science.

 

Copied from News from The Netherlands.

ME Research UK

News from The Netherlands - the ME/CFS Cohort and Biobank consortium (NMCB) has begun and eventually 6 projects will focus on biomedical research into ME/CFS. One of these is The Netherlands Brain Bank for ME/CFS (NHB-ME/CFS) which aims to collect brain tissue and make samples available to researchers worldwide.

Currently, 20 people with ME/CFS are already registered with The Netherlands Brain Bank and a call within The Netherlands has been made for more donors. https://tinyurl.com/y8h86bsj

 

The NMCB are recruiting for a new research nurse.

"Your role within NMCB as a (research) nurse is to carry out and coordinate the inclusion of patients in the cohort and the biobank."

https://werkenbij.amsterdamumc.org/nl/vacatures/zorg/researchverpleegkundige-mecvs-en-post-covid--

Their Twitter post advertising the role

 

https://mecentraal.wordpress.com/2024/09/30/oproep-vragen-aan-ruud-raijmakers/#more-32165

ME centraal is asking people to send in questions for Ruud Raijmakers, if anyone here is interested in that.

He manages one of the projects at the NMCB consortium.