News from The Netherlands

1) When I read it yesterday it was a real "Pinch me, is this happening in The Netherlands?" moment. Really encouraging.

2) Knoop claimed ReCOVer found CBT helped for PEM.

See slide and discussion here (the thread on ReCOVer)
 
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ME Centraal just posted a participant report on the Long Covid symposium that was held on 19 October in Amsterdam.

GT translate version (translation not great):A Feast of Recognition (mecentraal-wordpress-com.translate.goog)
Original: Een Feest van Herkenning (wordpress.com)

I think this section makes a nice read (attempt at better translation):

"Much attention was paid to current biomedical literature and Dutch biomedical research. There was an atmosphere of 'we have to do something about this'. There were several hundred attendees, including many doctors - researchers and specialists, but also general practitioners who were looking for guidance. The representative of Cognitive Behavioural Therapy, who "angstvallig" adhered to the dogma that 'CBT is the only treatment method', stood alone in the room, somewhat dismayed, listening to the representative of the ME/CFS association ànd a professor of CBT who turned on [/abandoned] his therapy en publique and criticized his research methods, resulting in great applause from the audience.

That a new wind is blowing was also evident from the doctor/specialist who walked up to the ME/CFS representative during the break and apologized. He had called ME patients 'crazy' for decades, ridiculed them internally because he could do nothing with them. Only now did he realize that he had been wrong all these years. He personally apologized for that."
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One thing that gives me hope is that a paradigm change is rarely a gradual smooth linear thing. The situation looks more or less static for a long time, then a critical mass is reached and over a (relatively) short period the whole situation changes.

With a bit of luck, the sort of thing that happened at the symposium is what a paradigm change looks like.
 
Sean said:
One thing that gives me hope is that a paradigm change is rarely a gradual smooth linear thing. The situation looks more or less static for a long time, then a critical mass is reached and over a (relatively) short period the whole situation changes.

With a bit of luck, the sort of thing that happened at the symposium is what a paradigm change looks like.
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Might have finally reached a stage where they fucked to many of us over. I think that's also where Knoop went wrong. He went after LC-patients with harmful treatments, a group that is composed of a lot of physicians, nurses etc. who were impacted during the pandemic. He used to be up against a couple of scientists in NL, now he's put himself up against dozens.

I'm thankful that he in his hubris tried to claim LC for his cabal because it exposed to a much larger group the sham that is CBT/GET for any physical disease. Which in term seems to have spurred on the biomedical researchers in debunking their theories and finding the biomedical origins of a number of diseases.
 
He had called ME patients 'crazy' for decades, ridiculed them internally because he could do nothing with them.
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This after-report is somewhat encouraging and it's nice that this person apologized, but at some point they have to understand that this is a serious behavioral failure and that it needs to be rooted out and fixed entirely. Professionals just don't behave this way, don't think this way. Hell, well-adjusted children don't behave like this. Especially the "could do nothing with them". What is even up with that way of thinking?!

This is learned misbehavior, and it's the root cause of the failure. Medicine doesn't seem to do root-cause failure analyses, or they are unable to do one when they are at fault, but until this failure of reasoning is addressed, failure like this will continue to happen.

The idea behind professionals isn't just about training, it's about responsibility and accountability, and both have failed completely here.
 
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rvallee said:
This after-report is somewhat encouraging and it's nice that this person apologized, but at some point they have to understand that this is a serious behavioral failure and that it needs to be rooted out and fixed entirely. Professionals just don't behave this way, don't think this way. Hell, well-adjusted children don't behave like this. Especially the "could do nothing with them". What is even up with that way of thinking?!

This is learned misbehavior, and it's the root cause of the failure. Medicine doesn't seem to do root-cause failure analyses, or they are unable to do one when they are at fault, but until this failure of reasoning is addressed, failure like this will continue to happen.

The idea behind professionals isn't just about training, it's about responsibility and accountability, and both have failed completely here.
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Could do nothing comes from, ik kan er niks mee. Meaning he simply doesn't have a method for treating. The bit about calling us nutters and ridiculing us behind closed doors is very very damning about the overall attitude though.
 
If I could go back and change the course of history I would stop Covid and LC from ever happening.

On the other hand, it has probably been a serious boost for progress on ME, both technical and ethical.

So there's that silver lining.
 
Sean said:
If I could go back and change the course of history I would stop Covid and LC from ever happening.

On the other hand, it has probably been a serious boost for progress on ME, both technical and ethical.

So there's that silver lining.
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I've been watching the Polybio and Swedish symposium's for a bit and it does not only seem to have given us a boost but also diseases like SLE, Lyme, FM, GWS and a bunch more. I see IBS getting mentions too, I think they were more or less in the same boat as us with regards to attitudes and treatment options.

There seem to be a number of entities emerging that want to study post-infectious disease or diseases with low-grade infections going on as a whole. If I'm distilling the info correctly there seems to be evidence of similar if not the same patterns in a multitude of diseases, just with very different expressions.
 
Hi

Can any Netherlands based members help us with connecting with organisations we’ve already approached and let us know of any other organisations to contact.

ME CVS Nederland - www.mecvs.nl info@mecvs.nl
Email sent 14 Sep- followup sent 4 Oct

ME/CVS Vereniging - https://me-cvsvereniging.nl/ info@me-cvsvereniging.nl
Email sent 14 Sep; reply 14 Sep, have shared the petition link, will ask board about support of the letter
4 Oct - Followup sent

ME Centraal - Dutch ME info channel - signed thanks ME Centraal

thanks all
 
ME CVS Nederland I doubt is gonna sign either way. They sometimes pay lip-service to biomedical stuff but it's a BPS-outfit as far as I know.

https://mecentraal.wordpress.com/2023/06/12/boekje-open/

More about that in the link.

From reading mecentraal I also got the following organisations:

-#millionsmissingholland

https://www.facebook.com/MillionsMissingHolland/?locale=nl_NL

https://twitter.com/MMissingHolland

-Steungroep ME en Arbeidsongeschiktheid (this one is specifically aimed at helping with disability claims I think)

https://steungroep.nl/?view=featured&start=46

And possibly ME Den Haag could be interested:

https://www.facebook.com/GroepMEDenHaag/?locale=nl_NL
 
Grant for PhD researcher Braeden Charlton
Braeden Charlton, PhD candidate in the research group of dr. Rob Wüst at the department of Movement Sciences at VU Amsterdam, has been given a grant by the ICanCME Research Network competition in the ME stars of Tomorrow Scholarship program 2023.

The ICanCME (Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network) awarded the grant of CA$20.000 for the proposal Understanding post-exertional malaise in myalgic encephalomyelitis: an energy-sensing problem?
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"
Well outlined, thorough and solid proposal and study design partially based on applicant’s previous work with PEM in Long COVID. Strong methodology and easily understood. Appropriate literature cited, sex and gender considerations have been included. Award and research will strengthen international affiliation and collaboration between ICanCME, the Netherland’s ME/CFS Cohort and Biobank, Vrije and York University.
Anonymous
Reviewer of proposal"

Braeden, who is an accomplished runner, started his PhD project earlier this year, after completing his Resesarch Master of Human Movement Sciences at VU Amsterdam. His PhD project is titled Explaining skeletal muscle-related symptoms in patients with ME/CFS: from skeletal muscle to exercise immunology, and he is supervised by prof.dr. R.T. Jaspers, VU Amsterdam, prof.dr. M. van Vugt, Amsterdam UMC, and dr. R.C.I Wust also VU Amsterdam.
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https://www.amsterdamumc.org/en/research/news/grant-for-phd-researcher-braeden-charlton.htm

eta:
PhD Immunology and infectious diseases for studying the cause of ME/CFS
Unraveling the biomedical cause of the enigmatic disease ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating and enigmatic disease with several symptoms that resemble Long-COVID. Until now, very little biomedical research has been done to study the underlying cause of this disease, and therefore ME/CFS still lacks a universally accepted case definition, cause, diagnosis, and treatment. Through a large grant of ZonMw a national consortium (NMCB) has now been set up, which aims to identify the biomedical cause(s) of ME/CFS. The project of this vacancy will specifically focus on autoimmunity as a main cause of ME/CFS, based on promising preliminary data on Long-COVID.

In this four year project, we aim to unravel the underlying mechanisms of ME/CFS through the development of a unique in vivo model, for which proof-of-concept has already been obtained. This project will combine the fields of immunology and infectious diseases to characterize the pathogenesis of ME/CFS using in vitro models (cellular and organotypic), mouse models for ME/CFS, several types of proteomics, and bioinformatics. The studies will be performed in close collaboration with our partners at the Vrije Universiteit (VU), UMC Utrecht and Sanquin. In addition, the research may be extended to closely related diseases such as Long-COVID, post-treatment Lyme disease, and Q fever fatigue syndrome. Potentially, the candidate may even be involved in pilot therapeutic clinical trials for these diseases.

Combined, this project aims to:

(1) provide a biomedical explanation for ME/CFS (i.e. autoimmunity).

(2) identify biomarkers (i.e. specific auto-antibodies) that will enable objective diagnosis of ME/CFS

(3) make the first step for in vitro and in vivo models for ME/CFS to test drugs to treat ME/CFS in the future

The PhD student will develop an in vivo model for ME/CFS, using a combination of techniques including proteomics, RNA sequencing, antibody isolation, and animal behavioral tests. This will allow to study the underlying molecular mechanisms of the disease, develop objective diagnostic tests for ME/CFS by techniques such as Luminex, and test the efficacy of candidate drugs.
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https://carriere.nrc.nl/vacatures/v...-the-cause-of-me-cfs-amsterdam-553769-11.html
 
Trish said:
CA$20.000 won't go far for a 4 year PhD project. I assume the project is already funded and this is just a top up.
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Indeed (the price just for your PhD student to have an office desk is already beyond CA$20.000 per year in NL), these are two different things. Jeroen den Dunnen has funding for a PhD position (possibly as part of his ME/CFS grant by ZonMW) which he is now advertising www.twitter.com/DrDenDunnen/status/1722168070074957968, and it seems Braeden Charlton got a small extra grant.
 
PhD position in ME/CFS project
We offer a position for an PhD-student to work in a multidisciplinary team of scientists, clinicians, and patient representatives. You will investigate pathophysiological mechanisms underlying ME/CFS and help building a Dutch pediatric ME/CFS cohort.
01.12.2023
  • WO
  • Tijdelijk
University Medical Center Utrecht (UMC Utrecht)

Functieomschrijving
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease that currently still lacks a universally accepted cause, diagnosis, or treatment. Through a large ZonMW grant a national consortium (NMCB) has now been created, which aims to identify the biomedical causes(s) of ME/CFS. There is some evidence that ME/CFS has been linked to various (subtle) perturbations in immune cells. Moreover, disturbances in mitochondrial activity in immune cells of ME/CFS patients are observed. In this 4-year ZonMW funded project you will study how cellular metabolism and mitochondria function is affected in monocytes of ME/CFS patient and how this impacts monocyte function, their ability to communicate with the nervous system, and ultimately whether this underlies the cause of ME/CFS. To that end you will be using various in vitro assays, metabolomics, transcriptomics, and imaging to assess mitochondrial function and metabolic fluxes in monocytes and assess how this affects monocyte behavior. In addition, you will help to build a pediatric ME/CFS cohort by writing protocols, setting up clinical data management platform and help with perform several assessments (e.g. pain and fatigue measurements) and process blood.
Functie-eisen
We are looking for talented and highly motivated PhD with a degree in biomedical sciences. You have excellent experimental skills and preferable have some experience in either mitochondrial assessment, cell culture, flow cytometry and big data-set analysis. Previous experience in and license for working with animals is a plus. Affinity with neuro-immunology is preferred as well as the willingness to engage with patients. You should have good communication skills and organizational talent. Besides this, you as our new colleague should be flexible, versatile, and a good team player.

Your application should include a motivation letter, a CV, and a brief description of past work experience.
Arbeidsvoorwaarden
The maximum salary for this position (32 - 36 hours) is € 3.677,00 gross per month based on full-time employment
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https://carriere.nrc.nl/vacatures/vacature-phd-position-in-me-cfs-project-utrecht-556154-11.html
 
Trial By Error: Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report

"A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to prevent worsening of complaints, and about distributing energy and rest (pacing), was most appreciated,” (Translations in this post via Google Translate.)

The survey was conducted as part of the process of developing a set of national ME/CFS management and treatment guidelines. According to the article, these and a few other findings about the impact of the illness were released during a recent meeting in Utrecht at the Knowledge Institute of the Dutch Association of Medical Specialists, which is involved in the guideline development process."

https://virology.ws/2023/12/06/tria...get-cbt-as-the-worst-approach-per-new-report/
 
Andy said:
Trial By Error: Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report

"A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to prevent worsening of complaints, and about distributing energy and rest (pacing), was most appreciated,” (Translations in this post via Google Translate.)

The survey was conducted as part of the process of developing a set of national ME/CFS management and treatment guidelines. According to the article, these and a few other findings about the impact of the illness were released during a recent meeting in Utrecht at the Knowledge Institute of the Dutch Association of Medical Specialists, which is involved in the guideline development process."

https://virology.ws/2023/12/06/tria...get-cbt-as-the-worst-approach-per-new-report/
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Do we know more about this survey, the report and its context? The results could be useful in communicating with Cochrane the harm they are causing. It's similar to the survey NICE commissioned, as well as all the other evidence gathered in the (Member only) thread on Published evidence of harm from exercise therapy.
 
rvallee said:
Do we know more about this survey, the report and its context? The results could be useful in communicating with Cochrane the harm they are causing. It's similar to the survey NICE commissioned, as well as all the other evidence gathered in the (Member only) thread on Published evidence of harm from exercise therapy.
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Yes, I had spotted that. I'll copy the link to David Tuler's article to the harms thread.

Edit: I see you have already done so, thanks.
 
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