News from Belgium and Luxembourg

[Hutan]

Long COVID and return to work: a qualitative study 2022 Kohn et al
This study, unfortunately paywalled, is from the Belgian Healthcare Knowledge Centre.

One hundred and thirty-four people participated in the study. Participants described various clinical symptoms precluding their return to work. They also face sceptical reactions from employers and colleagues and a lack of support from the social welfare system to facilitate their return to work.

 

[Hutan]

New study out - more qualitative work from Kohn et al. What it says on the tin:
Difficulties encountered by long COVID patients in the Belgian health system 2022 Kohn et al

 

[Dolphin]

From: Dr. Marc-Alexander Fluks
Subject: Webinar: Training for physicians on YPWCs, March 9, 2023 [in Dutch]


For those of you understanding Dutch: There is an online training by
Leuven University, Belgium, for physicians on YPWCs.

Title: The tired Adolescent
Station: Pentalfa
Leuven University
Date: March 9 2023
Time: 19:00 UTC
URL:
https://gbiomed.kuleuven.be/pentalfa/sessies/de-vermoeide-adolescent/
Google translation:
https://gbiomed-kuleuven-be.transla..._sl=nl&_x_tr_tl=en&_x_tr_hl=nl&_x_tr_pto=wapp
Rerun: https://gbiomed.kuleuven.be/pentalfa/herbekijken/
Email: pentalfa@kuleuven.be
Registration: https://gbiomed.kuleuven.be/pentalfa/sub/?webinarRegister=true&sessie=304497

 

[Dolphin]

From: Dr. Marc-Alexander Fluks


May 11, the University Leuven 'Continuing Education Programme' Pentalfa
in Belgium will organize a free online symposium (in Dutch) on
Post-Covid, including ME/CFS, for MDs.

Date: May 11, 2023
Time: 18:00 UTC
URL: http://www.pentalfa.be
WebTV:
https://gbiomed.kuleuven.be/pentalfa/algemene-informatie/zoom-webinar/
Google translation from Dutch to English,

https://gbiomed-kuleuven-be.transla..._sl=nl&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

Info is available at,

https://gbiomed.kuleuven.be/pentalfa/sessies/langdurige-klachten-na-covid-19/
Google-translation from Dutch to English,

https://gbiomed-kuleuven-be.transla..._sl=nl&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

Register at,

https://gbiomed.kuleuven.be/pentalfa/sub/?webinarRegister=true&sessie=304608

The symposium will be archived online at,
https://gbiomed.kuleuven.be/pentalfa/herbekijken/

 

[ME/CFS Science Blog]

Thanks for sharing.

 

[Solstice]

Multi-disciplinary approach. Two psychiatrists invited that make a comparison with CFS. Talking about tailor-making recovery pathways(with what?). This doesn't look good.

 

[Dolphin]

Dr. Marc-Alexander Fluks has highlighted newspaper reports about complaints regarding Elke Van Hoof (Belgian CFS researcher). The reports date to May 2023 but the computer only found the reports only this morning.

https://www.hln.be/binnenland/burn-...hoof-klagen-toxisch-leiderschap-aan~a0ceddd5/
https://www.bruzz.be/samenleving/in...ke-van-hoof-vub-voor-toxisch-leiderschap-2023
https://www.vrt.be/vrtnws/nl/2023/0...n-out-behandeling-die-dan-toch-niet-zo-spect/
https://www.standaard.be/cnt/dmf20230512_97227259
https://www.vrt.be/vrtnws/nl/2023/0...sor-elke-van-hoof-reageert-op-aantijgingen-o/
https://www.demorgen.be/snelnieuws/...kers-klagen-toxisch-leiderschap-aan~b0ceddd5/
https://www.gva.be/cnt/dmf20230504_97019891
https://www.demorgen.be/nieuws/ook-...ndanks-gebrek-aan-academisch-bewijs~b32d0925/

 

[ME/CFS Science Blog]

Dr. Elke Van Hoof is a psychologist who previously worked with Kenny De Meirleir and published several papers on CFS. She then moved to other things such as burnout and hypersensitivity. In the articles, her team accused her of toxic leadership. She also made some questionable claims about Eye movement desensitization and reprocessing (EMDR) as a treatment for burn-out.

 

[Dolphin]

https://www.vrt.be/vrtnws/nl/2024/0...replein-voor-vergeten-slachtoffers-chronisch/
Automatic translation:
Action in Brussels for patients with chronic fatigue syndrome: "Doctors often think it is all in the mind"


To mark World ME/CFS Day, an awareness campaign for the forgotten disease 'myalgic encephalomyelitis' or chronic fatigue syndrome (ME/CFS) took place on Place Brouckère in Brussels. The organizers demand better care and more scientific research.


BRUZZ

Sat May 11 16:59

Chronic fatigue syndrome is a chronic disease that causes extreme exhaustion, pain and cognitive impairment. The disease usually occurs after an infection and is described by patients as a perpetual flu.

In Belgium, an estimated 20,000 to 45,000 patients suffer from ME/CFS, but the cause of the disease is unknown and there is no effective treatment yet. With a campaign in which dozens of empty shoes were displayed, symbolizing the millions of patients who have disappeared from public life worldwide due to the disease, the non-profit organization 12ME is now drawing attention to their situation.

"There is a need for better training of healthcare providers and doctors in Belgium," says chairman Kristien De Vos. "Because there is not yet a clear medical test for ME/CFS, doctors still too often think that the condition is all in their head. As a result, the disease is treated incorrectly and patients encounter stigma and misunderstanding."

12ME therefore advocates better care and more scientific research into the disease. Germany and the Netherlands have now drawn up a research program following a European resolution from 2020, but Belgium is still lagging behind.

 

[Dolphin]

Wanneer sporten je gezondheid in gevaar brengt
https://www.eoswetenschap.eu/psyche-brein/wanneer-sporten-je-gezondheid-gevaar-brengt

Automated English translation:
When exercise puts your health at risk
https://www-eoswetenschap-eu.transl...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

https://www-eoswetenschap-eu.transl...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Jolien Hendrix
Jolien Hendrix is a PhD researcher at the Vrije Universiteit Brussel and KU Leuven. Her research focuses on the role of epigenetics and the autonomic nervous system in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. She compares patients with healthy individuals to investigate which biological abnormalities could explain their symptoms. The research is supervised by professor Jo Nijs, professor Lode Godderis and dr. Andrea Polli and is funded by FWO.

https://twitter.com/user/status/1841126055874019791

 

[Dolphin]

Post-Covid Awareness Day in Belgium: Protest Belgian patients.

Go to (Google translation from Dutch to English),

https://www-bruzz-be.translate.goog...nnen-soms?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

 

[Tree]

Petition for Long covid, MEcfs, Lyme, Pots and Fibromyalgia patients in Belgium

(Saw the petition started in April 2024, but did not see it shared in this thread.)

Long Covid, ME/CVS, Lyme, POTS en Fibromyalgie patiënten vragen jullie hulp - online-petitie

Not Recoverd Belgium en de patëntenverenigingen vragen om * Een gecoördineerde aanpak, gebaseerd op de laatste wetenschappelijke inzichten; * Betere kennis van multisysteemziekten bij huisartsen en specialisten, meer aandacht voor deze ziekten binnen de opleiding; * Het beter herkennen van PEM...

www.openpetition.eu

 

[wallfish]

Belgium's share of people on long term sick leave reaches record highs: 600k in a 11M population. Recently, a report leaked that claims up to 59% of those people are actually fit to work.

ME/CFS has come up in the margin. Last week, Ruben Mersch used ME/CFS as an example of "illness without disease", but what I really want to share here is a response from Boudewijn Van Houdenhove, a professor-psychiatrist. In this response, he defends the illness experience of ME/CFS patients, but also argues in favor of the biopsychosocial approach.

The article is paywalled and in Dutch. Some machine-translated snippets:

I learned that the “illness” aspect of those conditions — the suffering of the patients — is in any case genuine. It also became clear to me that many of them are confronted with misunderstanding, dismissal, and stigmatizing remarks.

In ME/CFS patients, there are indications that their immune system — often after an infection, prolonged stress, or a combination of both — remains stuck in a mildly activated state. This affects the brain and results in physical, mental, or emotional exertion triggering a flu-like feeling of malaise. Those underlying disease-related aspects presumably also play a role in burnout and long covid.

• I am not sure how "stuck in a mildly activated state" translates to biology but I suspect it's not very accurate. Could someone help me with this?
• The comparison to burnout, a phenomenon that resolves with rest and removal of a stressor, drags down the gravity of ME/CFS
• The "body stuck in state X" narrative has been used in the past to argue for GET, CBT, brain retraining and the like
• Prolonged stress as a trigger, I'm not sure about either (*)

As long as the disease mechanisms are not fully unraveled and treatable, rehabilitation remains the key concept, preferably as early as possible.

This, to me, gives the impression that the illness can be overcome if patients would just try hard enough. Perhaps in GET, CBT or 'pacing up'. False expectations, false hope.

Furthermore, I noticed that the stories I heard were often filled with accumulated physical and/or psychosocial problems. Traumatic experiences — including those from early childhood — were not uncommon.

Some more psychologisation through anecdotes. I'm pretty sure there is no good evidence for childhood trauma being more prevalent in MECFS than in other illnesses. (*)

The discussion about people who are long-term “ill without disease” should not start from a distinction between illness and disease, but from a broad bio-psycho-social view of illness and health. Otherwise, those unfortunate people risk remaining the pariahs of our medical system.

The bio-, the psycho- and the social aspects of ME/CFS should get exactly the same ratio of attention as they do in cancer, diabetes or polio. But they don't. The psychologisation of MECFS under the guise of a BPS approach is a fundamental contributor to the "misunderstanding, dismissal, and stigmatizing" the author aims to address.


(*) I am searching for some discussions/conclusions/evidence on the relevance of childhood trauma and prolonged stress. I'll come back to update with my conclusions. Edit: this page on MEPedia was a good start to answer my questions on childhood trauma.

 

[Jonathan Edwards]

I am not sure how "stuck in a mildly activated state" translates to biology but I suspect it's not very accurate. Could someone help me with this?

It does not really mean anything specific enough to be useful. There isn't any reliable evidence of activation. There is circumstantial evidence for a shift in the way the immune system is signalling to brain and perhaps other tissues but it is in no way direct or conclusive.

Taken together with the other claims I see this as rationalisation making use of what seems convenient but without any real insight.

 

[wallfish]

It does not really mean anything specific enough to be useful. There isn't any reliable evidence of activation. There is circumstantial evidence for a shift in the way the immune system is signalling to brain and perhaps other tissues but it is in no way direct or conclusive.

Thanks for your response! Could you expand on "circumstantial evidence for a shift in the way the immune system is signalling to brain" with some keywords, so that I can read more?

Boudewijn Van Houdenhove, a professor-psychiatrist.

Oh, the man has a page on MEPedia. He's infamous. This stuff goes back to before I was born. I can't believe this still goes on, and isn't some well-known scandal.

Are there any Belgians here? What's the chance Pano would be interested in doing an episode on this? Seems like something that's up their alley. They could have a huge impact. Are there/have there been any initiatives from Belgian charities to bring these stories to the public? Sorry for tagging you @ME/CFS Science Blog , I believe you're involved with a charity in Belgium. I think I'm not aware of a lot of the history and landscape.

 

[Jonathan Edwards]

Thanks for your response! Could you expand on "circumstantial evidence for a shift in the way the immune system is signalling to brain" with some keywords, so that I can read more?

That's quite hard to crystallise. 10 years of S4ME posts would cover it!!

But basically if the illness occurs after infection it is likely to involve a shift in immune signalling and if there is brain fog it is affecting the brain, so the basic clinical picture gives us the circumstantial evidence. We now have the link to the BTN2A1 gene (which has a thread) which would fit but might be misleading us a bit so far. We also have links to several genes expressed in brain that look as if they fit, but again, the evidence is indirect.

Learning science is a long process of absorbing things bit by bit. I doubt there is a better way than to read the threads here to get the background. There are lots of posts giving simple explanations for unfamiliar ideas.

Are there any Belgians here?

Some excellent Belgians here.

 

[ME/CFS Science Blog]

Are there any Belgians here? What's the chance Pano would be interested in doing an episode on this? Seems like something that's up their alley. They could have a huge impact. Are there/have there been any initiatives from Belgian charities to bring these stories to the public?

Some useful links for the Belgian context of ME/CFS:

Home - ME-Gids.net

Welkom op ME-Gids.net (voorheen mecvs.net), een informatieve en interactieve website over Myalgische Encefalomyelitis, kortweg ME. ME wordt ten onrechte vaak aangeduid als chronisch vermoeidheidssyndroom (CVS). Wij ijveren dan ook voor een biomedische aanpak gezien de neuro-immunologische aard...

www.me-gids.net

Home pagina - 12ME

Welkom bij 12ME Een vereniging die zich inzet voor personen met myalgische encefalomyelitis/chronisch vermoeidheidssyndroom (ME/CVS) Warmste Week acties voor ME/CVS De Warmste Week (DWW) staat dit jaar in het teken van onzichtbare ziektes. Personen met ME/CVS en hun naasten hebben daarom...

12me.be

Accueil | Millionsmissingbelgique

Bienvenu-e sur le site de l'association Millions Missing Belgique consacré à l'encéphalomyélite myalgique ou syndrome de fatigue chronique (EM/SFC)

www.millionsmissingbelgique.com

Home

chronisch vermoeidheidssyndroom

www.wucb.be

 

[wallfish]

But basically if the illness occurs after infection it is likely to involve a shift in immune signalling and if there is brain fog it is affecting the brain, so the basic clinical picture gives us the circumstantial evidence. We now have the link to the BTN2A1 gene (which has a thread) which would fit but might be misleading us a bit so far. We also have links to several genes expressed in brain that look as if they fit, but again, the evidence is indirect.

Thanks for your explanation.

Some useful links for the Belgian context of ME/CFS:

Thank you for pointing me to these websites again. I was aware of them but now that I have read a bit more history, I see some of the stories through a different lens.

I have some questions for those who have been in this longer than me:

• Do you think actions like writing a response to the newspaper that published the article in #53 are worth it?
• I can give the benefit of the doubt regarding the intentions of some BPS proponents, but are people like the professor in #53 really genuine? It's as if he carefully chooses his words to undermine patients. Why does someone like him actively try to influence the public perception for the worse, even from retirement?

I have been thinking about writing something similar to @Adam pwme's scandal explainer, but from a Belgian perspective. I would try to get it published through SKEPP, a Belgian nonprofit focused on scientific skepticism and critical thinking. From there, I would try to make some buzz in the university communiy (surely the KULeuven can not be ok with this?) and reach out to Pano.

I may be very naive about all this. I'd appreciate thoughts from the more experienced here.

 

[Utsikt]

Do you think actions like writing a response to the newspaper that published the article in #53 are worth it?

It will probably feel like banging your head against a brick wall.

I can give the benefit of the doubt regarding the intentions of some BPS proponents, but are people like the professor in #53 really genuine? It's as if he carefully chooses his words to undermine patients. Why does someone like him actively try to influence the public perception for the worse, even from retirement?

They are sincere in the sense that they are willing to put their name to this in a public space. What goes on in anyone’s mind is impossible to say.

 

[Dolphin]

From Anil about ME on Facebook:

[Comment: Michiel Tack is a great asset to the ME/CFS community in my opinion]

Automated translation:

Extensive article with Michiel Tack of 12ME.

"In 2019, together with fellow patient Dascha 12ME. It became an official non-profit organization, run by two families and a lot of volunteers. Michiel: "Our first objective is to raise awareness, because ME/CVS in Belgium was hardly taken seriously back then. In addition, we wanted and want to influence the policy. We repeat the same message over and over again: with small interventions you can improve the care for fated mates. There is a lot of prejudices and harmful treatments now. If we stop that, we have already taken an important step forward. A third pillar of 12ME is the biomedical research. ”

"The neighbors are doing remarkably better. That's something to think about, emphasizes Michiel. "In the Netherlands and Germany, there is money for research, centers of expertise are being built. But in Belgium, the psychosomatic vision remains dominant, as if ME/CVS is a disease that people mostly blame on themselves. For example, doctors continue to advise gradual exercise therapy, building up activities and exercises step by step. When patients refuse to go in, they seem unmotivated. If they do it anyway, they're getting even sicker. A change in mentality would be a big help here, it doesn't require a big budget. ”

ME/CVS-patiënt Michiel Tack verdedigt patiëntenbelangen met 12ME - Samana versterkt chronisch zieken en mantelzorgers

samana.be

—-
Uitgebreid artikel met Michiel Tack van 12ME.

"In 2019 richtte hij samen met medepatiënt Dascha 12ME op. Het werd het een officiële vzw, gedragen door twee families en heel wat vrijwilligers. Michiel: “Onze eerste doelstelling is bewustmaking, omdat ME/CVS in België toen nauwelijks ernstig genomen werd. Daarnaast wilden en willen we het beleid beïnvloeden. We herhalen keer op keer dezelfde boodschap: met kleine ingrepen kan je de zorg voor lotgenoten al een pak beter maken. Er zijn nu heel wat vooroordelen en schadelijke behandelingen. Als we die stopzetten, zetten we al een belangrijke stap vooruit. Een derde pijler van 12ME is het biomedisch onderzoek.”

"De buurlanden doen het opvallend beter. Dat stemt tot nadenken, onderstreept Michiel. “In Nederland en Duitsland is er geld voor onderzoek, er worden expertisecentra uitgebouwd. Maar in België blijft de psychosomatische visie dominant, alsof ME/CVS een ziekte is die mensen grotendeels aan zichzelf te wijten hebben. Artsen blijven bijvoorbeeld graduele oefentherapie adviseren, waarbij activiteiten en oefeningen stap voor stap worden opgebouwd. Als patiënten weigeren om erin mee te gaan, lijken ze niet gemotiveerd. Als ze het toch doen, worden ze nog zieker. Een mentaliteitswijziging zou hier een grote hulp zijn, daarvoor is geen groot budget nodig.”