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

Andy

Andy

Retired committee member
This project is one of several that have been discussed in this thread, The Netherlands - €28.5 million ME/CFS research program - funding awards announced April 2023

I thought it was worth having its own thread primarily due to the sub-projects that are also attached to it.


Project overview.

The Netherlands ME/CFS Cohort and Biobank (NMCB) consortium is a national collaboration of research institutes, patient organisations and clinical centres. The consortium focuses on biomedical research on ME/CFS.

One of the activities of the consortium is the establishment of a comprehensive patient cohort and biobank. In this regard, attention is given to the inclusion of severely ill patients and the application of international diagnostic standards. The biobank collects medical patient data and patient material for scientific research and the cohort forms a patient registry for conducting clinical studies.

Building on this infrastructure, and in close cooperation with patient organisations, researchers within this consortium will conduct studies aimed at gaining more insight into the underlying mechanism of the onset of ME/CFS. The emphasis is on developing new methods for treatment and diagnosis.

The consortium will enter an eight-year collaboration with the ambition to develop a sound understanding of the mechanisms causing ME/CFS and to see this knowledge translated into better treatments and diagnosis.

https://projecten.zonmw.nl/en/project/netherlands-mecfs-cohort-and-biobank-nmcb-consortium
 
Sub-studies

As a broad national coalition of research institutes, patient organisations and clinical centres, the NMCB consortium will jointly conduct research on highly relevant research themes. The research projects test innovative hypotheses that can lead to a thorough understanding of ME/CFS and, by extension, better diagnostics and treatment options:

[I have added the first two paragraphs of the project description and link to each individual project in separate posts below.]
 
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Autoimmunity as a cause of ME/CFS symptoms (AutonoME)

Projectomschrijving
ME/CFS is a debilitating disease with an unknown cause. It is possible that autoimmunity plays a role in ME/CFS; this means that people produce antibodies directed against their own body, which can thus cause a wide variety of symptoms. To find out whether autoimmunity causes ME/CFS, antibodies from ME/CFS patients are being studied. We also aim to take a step towards drug testing and thus finding new treatment methods.

Goal
The aim of this study is to find the biomedical cause of ME/CFS and identify biomarkers (autoantibodies in the blood), which would enable an objective diagnosis of this disease. The plan is also to work towards testing candidate drugs in the future, for example drugs currently used for autoimmune diseases. The researchers do this by creating an ME/CFS animal model that is unique in the world (see approach/method of working).

https://projecten.zonmw.nl/en/project/autoimmunity-cause-mecfs-symptoms-autonome
 
EnergiseME: Evaluation of the link between auto-immunity and derangements in immune cell metabolism and function in ME/CFS

Projectomschrijving
Which alterations in the metabolism of immune cells could be the cause of ME/CFS? To find out, researchers will map the metabolism of immune cells from adult and adolescent ME/CFS patients. They will also investigate how these alterations affect immune cells, cause symptoms of ME/CFS, and whether these changes are caused by autoantibodies in ME/CFS patients. The project will contribute to finding diagnostic criteria for ME/CFS and identifying new drugs to treat ME/CFS with.

Goal
Previous research showed disturbances in the mitochondria of immune cells and the presence of antibodies directed against own cells. This research will find out where these disturbances occur are and to what extent they cause ME/CFS. The research questions are:

  • How are the mitochondria and cellular metabolism affected in monocytes of ME/CFS patients?
  • How does auto-immunity link to metabolic derangements in monocytes of ME/CFS patients?
  • Does the metabolic auto-immune axis cause ME/CFS symptoms?
https://projecten.zonmw.nl/en/proje...unity-and-derangements-immune-cell-metabolism
 
Converging neurobiological and immune pathways in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-infectious fatigue syndromes (PIFS)

Projectomschrijving
Patients with myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS), or ME/CFS, have similar symptoms to patients with post-infectious fatigue syndromes (PIFS). Since it is unknown how these diseases originate, a proper diagnosis and treatment is still lacking for both ME/CFS and PIVS. This research aims to change this by joining the forces of patients, doctors and researchers.

Goal
Because ME/CFS and PIFS are similar, this project combines research into the pathophysiology of both diseases. Among other things, this project aims to map the similarity of symptoms, and whether these can be linked to changes in (neuro)inflammatory, immunological, metabolic, and neuroendocrine profiles. The project also investigates whether the development of the disease can be predicted. With this knowledge, the researchers aim to propose new diagnostic and therapeutic options.

https://projecten.zonmw.nl/en/proje...ways-myalgic-encephalomyelitischronic-fatigue
 
Brain changes in ME/CFS: Focus on the stress and immune system

Projectomschrijving
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) has various neurological symptoms, such as mood swings, lack of energy and problems with sleep and concentration. Despite initial evidence of brain involvement in ME/CFS, little is known about possible molecular and cellular changes in the brain. In this project, brain tissue will be collected through an ME/CFS donor programme. The brain tissue will be used to investigate systems that deal stress response, immunity and energy metabolism.

Goal
ME/CFS is often thought of as a brain disease because of its neurological symptoms. However, little is still known about changes in the brain of ME/CFS patients. By collecting brain tissue through a brain donor programme, this can be studied. This leads to more knowledge about the mechanism and possible origin of this disease and can thus help improve diagnosis and treatment, which is relevant for patients, doctors and researchers.

https://projecten.zonmw.nl/en/project/brain-changes-mecfs-focus-stress-and-immune-system
 
Explaining skeletal muscle-related symptoms in patients with ME/CFS: from skeletal muscle to exercise immunology (MuscleME)

Projectomschrijving
The MuscleME project aims to better understand the pathophysiology of muscle pain, fatigue and worsening of symptoms after exercise (post-exertional malaise) in patients with ME/CFS. For this purpose, blood and muscle biopsies from patients and other individuals from the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium will be analysed for structural and functional alterations. In addition, the mechanism underlying post-exertional malaise and the relationship between autoimmunity and muscle adaptations will be investigated. Biomarker clusters are being developed for better diagnostics, treatment and improved patient care.

Goal
This project aims to map ME/CFS patients based on skeletal muscle and circulatory phenotypes. It will also assess the changes in blood and skeletal muscle in patients with long-COVID and ME/CFS before and after onset of post-exertional malaise. Furthermore, the study aims to clarify the physiological link between autoimmunity, microclots and skeletal muscle structure and function. The knowledge acquired though this project may improve the diagnosis and treatment of ME/CFS.

https://projecten.zonmw.nl/en/proje...ptoms-patients-mecfs-skeletal-muscle-exercise
 
The molecular immune signature in ME/CFS as stratification tool for future personalized treatment

Projectomschrijving
ME/CFS is a serious chronic disease for which there is no proper treatment. In this project, blood from the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium will be examined for the presence of so-called immune signatures, which indicate that the immune system is activated. Whether immune cells in ME/CFS are hypersensitive to stimuli will also be investigated. This then leads to the formation of pathogenic inflammatory substances. If this is the case in ME/CFS, this research will show what makes ME/CFS patients sick and result in new treatment options.

Goal
The aim of this project is to gain insight into specific immune abnormalities in ME/CFS. The researchers hope to answer the following questions:

  • Can patients with ME/CFS be classified into subgroups using previously identified immune signatures that occur in patients with other disease states who also experience severe fatigue? And can specific symptoms be linked to these immune signatures?
  • Are immune cells of ME/CFS patients hypersensitive to stimuli and does this result in pathogenic inflammatory substances?
https://projecten.zonmw.nl/en/proje...tification-tool-future-personalized-treatment
 
It was been revealed that the MuscleME study is about to start their biopsies and bicycle tests.

@Grigor probably has some information on how this biobank is problematic as it involves the scandalous COFFI group, that is if I understood that corrently.

Unfortunately, the other biobank (Lifelines) run by Rosmalen is probably even a lot worse and is only looking at noise rather than ME/CFS.
 
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Thanks Andy.

NMCB said:
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) has various neurological symptoms, such as mood swings, lack of energy and problems with sleep and concentration.
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Is there any convincing evidence that, on average, people with ME/CFS have more mood swings than is normal for people faced with an extremely debilitating, isolating, stigmatised, under-resourced and often very painful health condition? A brain bank project is a good idea, but it seems a shame to focus in on the stress response, rather than having a more general exploratory framework.

EndME said:
@Grigor probably has some information on how this biobank is problematic as it involves the scandalous COFFI group, that is if I understood that corrently.
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Is this correct?
 
Hutan said:
Is there any convincing evidence that, on average, people with ME/CFS have more mood swings than is normal for people faced with an extremely debilitating, isolating, stigmatised, under-resourced and often very painful health condition? A brain bank project is a good idea, but it seems a shame to focus in on the stress response, rather than having a more general exploratory framework.
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There's a case to make about rapid irritability and sour mood, something normal and expected while ill, exhausted and in pain, but I have zero confidence that people who don't believe there is an actual illness can make that difference. So it's all dependent on what they believe. Change the people involved and you change everything. Not just the outcome, but the entire process at which they arrive at the outcome, all the paths and all the decisions they make along the way, and the way they interpret the data they noticed and recorded along the way.

Especially if I look at long haulers, yes, absolutely. There are clearly psychoneurological changes that affect mood, same as with any acute illness, but they are fully downstream of the illness, caused by the sickness response, and are in no way, shape or form a cause of anything. But this is the preferred way of looking at things because of psychosomatic ideology.

Everything you don't want in science...
 
Hutan said:
Is this correct?
Click to expand...

https://www.s4me.info/threads/the-netherlands-€28-5-million-me-cfs-research-program-funding-awards-announced-april-2023.24587/page-18#post-483979

The relevant post, can't wrap my head around what is what atm, but that's the post where COFFI is mentioned in relation to a Dutch project.

I see I already did a bit of digging if you view the posts after Grigor's. It's not the MuscleME group but it's ME/CFS and PIFS study done by Radboud University.

To give a bit of context about Radboud, it's the university that housed the NKCV which was run by Bleijenberg, v.d. Meer and others. The NKCV was central in rolling out CBT/GET in the Netherlands for ME/CFS patients so the link is pretty obvious. The NKCV moved to Amsterdam if I'm correct, but it's not hard to see how someone from Radboud doing research into ME/CFS would come into contact with COFFI.

Raaijmakers is the one in the video that mentions COFFI in one of the slides towards the end. After about 7:47 minutes. He talks some sense about post-infectious diseases but he keeps talking about chronic fatigue as well.



Relevant youtube-vid posted for reference.
 
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mood swings
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Really bizarre claim, ME patients often have no mood because it requires too much energy to be moody. Even among doctors who think ME is psychiatric, I rarely hear about mood swings. Random symptoms being wrongly attributed for no reason, as is tradition in medicine...
 
Hubris said:
Really bizarre claim, ME patients often have no mood because it requires too much energy to be moody. Even among doctors who think ME is psychiatric, I rarely hear about mood swings. Random symptoms being wrongly attributed for no reason, as is tradition in medicine...
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Oh yes, I'd forgotten about the label of 'flat affect' that is often thrown around. A number of us have made this point before, here's me saying this previously:
Hutan said:
I also note that if it's not emotional lability that we are getting labelled with, it's the opposite - flat affect or repressing emotions. Or alexithymia. So too much emotion, or too little, or just plain wrong emotions - one or all of those.
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Hutan said:
Oh yes, I'd forgotten about the label of 'flat affect' that is often thrown around. A number of us have made this point before, here's me saying this previously:
Click to expand...

I think Monty Python could make a brilliant movie out of this bullshit.
 
I have mostly little affect. It depends a lot on how fatigued I am on that day. An exhausted brain doesn't do much emotions because that is an energy-intensive function. When I do get stronger emotions they seem to be disproportionally intense compared to normal suggesting some difficulty regulating intense emotions. Being in pain makes it much harder to regulate emotions. I do have more emotions than what it looks like from the outside but their expression is affected so I look colder from the outside than I really am. That's a problem in social relations which is the most affected area in my opinion.

Also, I suspect being in physical pain and exhausted to other people looks like emotional pain or depression. The latter are two things ordinary people are more familiar with than the physical pain and exhaustion.

Also PEM makes me irritable but not always.
 
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I actually am disproportionally moody when I've strayed from my diet. It does things to my gut and it pushes brain fog to greater heights. The difficulty expressing myself and being prone to all sorts of sensitivities like sound make me lash out to people close to me. It's got nothing to do with weight or anything like that, more with eating gluten/eggs etc. But I do get moody when feeling bad. More withdrawn too.
 
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