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

Andy said:
I believe that they officially launched today.

Website - https://nmcb.eu/

Twitter post, linking to the website,
"We're proud to announce The Netherlands National Cohort and Biobank Consortia – an eight-year collaboration of Dutch research institutes, medical centers & patient organizations dedicated to the study of ME/CFS"
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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.
 
Recording of their Symposium from 21st Jan.

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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
 
Andy said:
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
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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

iStock-1432634229.jpg
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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/)

https://twitter.com/user/status/1793325072133796261
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Dolphin said:
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 ).
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Not using it, so why not :D .

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

https://twitter.com/user/status/1796990194199019641
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Solstice said:
ME centraal is asking people to send in questions for Ruud Raijmakers, if anyone here is interested in that.
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Pity I missed that and was not able to join. I would have liked to ask
  • why he adopted the Oxford criteria term PIFS for ME/CFS?
  • why he is collaborating with COFFI, an organisation to promote the ideologies of the psychosomatic movement (Wessely, Knoop, Van Der Schaaf, Wyller, Lloyd, Moss-Morris etc.) to pull Long Covid into their realm and revive the defunct Oxford criteria?
  • why he is promoting the use of the Oxford criteria to define Long Covid (PIFS)?
  • why he is promoting the use of the Oxford criteria (PIFS) as definition for other illnesses like Q fever, Lyme borreliosis and SARS-CoV-1?
  • why he is describing exercise therapy as an effective treatment for ME/CFS? (link to source questions)
  • why he is using the term Oxford criteria & COFFI term PIFS to study ME/CFS for the NMCB? (link)
  • in the context of the above, why, under "our plans" for the NMCB, does he talk about researching "the pathofysiology of fatigue" and "better diagnosis and treatment of fatigue"?
  • why does the NMCB collaborate with COFFI?
  • what is the nature of that collaboration and who of the NMCB is involved in that collaboration? (The forum does not let me upload the photo of the slide from the 2023 talk where Raijmakers is telling this*, but the slide says:
"Our plans

Setting up NMCB for further substudies into:
- the pathophysiology of fatigue (first 4 years)
-Beter diagnosing and treatment of fatigue (last 4 years)

The NMCB is like those in England/Germany/Australia and will closely collaborate with those.

Next to that the NMCB will also collaborate with international research consortia into fatigue like 'Collaborative on Fatigue Following Infections (COFFI)'"
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)




Edited to add: I think the NMCB is a good project, Raijmakers seems like the odd one out to me.

*Edited to add 2: Upthread @Solstice posted the full video of the talk. Raijmakers uses the Oxford criteria term and -definition ("PIFS" and "Unexplained and limiting fatigue with often additional complaints that lasts longer than 6 months" see 0.30) to lump together a bunch of conditions that were never intended to be put there (the Oxford criteria were for chronic fatigue syndrome, written for ME) and to talk about ME/CFS, just like his psychosomatic enthusiast buddies and their org COFFI.
He also calls the NMCB the "Netherlands ME/CFS and PIFS Cohort and Biobank", and talks about "chronic fatigue", 5.30. The slide I mention can be found from 6.42.

Edited to add 3: This interview from last August. Which again emphasises what he is doing, studying ME/CFS following the psychosomatic movement's framework of "PIFS", working with Andrew Lloyd and COFFI, advocating CBT.

You have completed the Long Term Follow Up (LTFU) for the Qure study (research into the treatment of Q fever fatigue syndrome).

The CBT/GET group that followed cognitive behavioral therapy with a fixed activity build-up was worse off after one year than the placebo (dummy drug) group.
Yet you recommended CBT booster sessions. How does that relate to your current research?

"I believe that body and mind are not separate. CBT can help or at least support some people. In the Qure study we saw a relapse in the CBT group after some time. Maybe that is a biomedical/immunological influence that continues.

The application of CGT/GET should be considered on a very individual basis. If someone is paying an incredible price, you should of course evaluate whether this is the right approach for that person.

If someone does CBT without an effort module, you are mainly talking about possible support. You should always continue to test the process of treatment with people and adjust it where necessary. "
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His background explains a lot. He has been coming from working on Q-fever in Nijmegen, which made me wonder if he had been working with Chantal Rovers, and yup. And not just her, he has published with Knoop, Van der Meer, and Bleijenberg. (See e.g. here and here.)

I think it's appaling that this guy is part of the NMCB, which is supposed to drop this fuckery.
 
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Last week there has been a chat session with the head of the NMCB, Jos Bosch.

"The interest was great, the questions varied and the answers very hopeful", according to the Dutch platform ME Centraal, who posted a report.

Google Translate english version: The Sessions – part 1: Jos Bosch
Original Dutch version: De Sessies – deel 1: Jos Bosch

Worth the read., with lots of information on the project.



I'd like to highlight two remarks in the interview as well:
"What do you like most and least about your job?
The most fun is the interaction with both patients and scientists. Every day I learn something new. That fits my curiosity as a researcher. And I work with a team that is committed with conviction. That gives a lot of energy."
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This again echoes the sentiment expressed by other ME/CFS researchers, the interactions with the patients is a fun part of this research. (Highlighted because of the DARVO-type claims by the psychosomatic movement that ME/CFS is a dangerous area to research because you fall victim to the horrible patients to the point where you have to retire.)

Indeed, there is talk within the patient community and also within researchers of formally apologizing for past misconceptions surrounding ME/CFS. This is similar to how other medical misconceptions have been addressed.
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(This would be rare and wonderful, and a key step in the collective healing this community will have to do.)

Quotable quote:
"Empathy is not the same as knowing what it is like."
 
Researchers apologizing would not mean much to me. They are at least trying to do better.

All the specialists that wronged me apologizing? Ain't going to happen.
Too many big ego's among them.

All doctors learning to say: We don't know. We can't find anything yet.

All the energy docs used in psychologizing and demeaning behavior could have been used to help find cause and treatments.
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Turtle said:
Researchers apologizing would not mean much to me. They are at least trying to do better.

All the specialists that wronged me apologizing? Ain't going to happen.
Too many big ego's among them.

All doctors learning to say: We don't know. We can't find anything yet.

All the energy docs used in psychologizing and demeaning behavior could have been used to help find cause and treatments.
.
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There is value in having the few researchers and clinicians who get it apologize for their ideological peers and what the systems did to us, it was, and still is, blatantly immoral. Shame is still a powerful motivator, and so far I have not seen many health care professionals actually denounce what happened. Not proportionally to the harm it caused.

Because it's more about denouncing than apologizing for it, and doing it by apologizing for the behavior of those who wronged us. This is how things change: first, very little, then somewhat, and finally a lot. Historically, those who have dared denounce this malfeasance have faced punishment from their institutions and culture. It takes a lot of courage to do the right thing, in a profession that more often than not explicitly punishes acts of courage, and it won't be without consequence. Being on the right side of facts when the culture is wrong always carries a lot of risk.

Apologies from the ideologues, though? I couldn't care less, and would never actually accept them as sincere. Not when they have made fake sincerity their main method. They can all just walk out into the sea and never come back, anything that doesn't involve never hearing from them again won't pass.
 
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