ME/CFS MEDICAL CENTER (the Netherlands & France, also takes patients from other countries using video consultations)

[Dolphin]

https://www.mecfsmc.eu/
We are the center for diagnosing and treating Myalgic Encephalitis, Chronic Fatigue Syndrome, Long Covid, and fatigue.

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https://www.mecfsmc.eu/?page_id=2055
Video Consultation and International Research:

With the increasing acceptance of video consultations and the growing demand for research from ME/CFS patients from other countries, we have developed a protocol where patients are exclusively examined, tested, and treated via video. This has enabled us to reach more patients worldwide and expand our research further. Currently, we are evaluating the pros and cons of this approach.

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https://www.mecfsmc.eu/?page_id=1094
What guidance is provided?

We have a minimum of a tri-weekly consultation with you. Usually, one session is for adjusting the medications, and two sessions are for guidance. Tests will be repeated as necessary.

Multidisciplinairy treatment

We can offer multidisciplinary video consultations with you and your healthcare providers, such as the general practitioner, physiotherapist, occupational therapist, psychologist, and other involved parties. This form provides the best multidisciplinary treatment.

The costs for the research and six months of treatment amount to €950.

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https://www.mecfsmc.eu/?page_id=1110

INEKE VERMEULEN



CEO
Ineke Vermeulen is CEO of the center.

MARTEN OTTEN



HEAD OF PATIENTCARE
Marten Otten is head of Patientcare.

CORINE REURTS



MEDICAL ASSISTENT

 

[Arvo]

Did some quick searching:

Marten Otten is a gastro-intestinal physician, who 10 months ago started a website (buikpijnpoli.nl & buikpijnpoli.eu) for "specialist abdominal pain care". Google Translated english site: Home - Abdominal pain clinic (www-buikpijnpoli-eu.translate.goog)

His LinkedIn site: Marten Otten - Maag-Darm-Leverarts met specialisatie Voedingsintolerantie - Buikpijnpoli.nl | LinkedIn
[Gastro-intestinal physician with specialisation in food intolerance], it discusses mast cell issues as such:

Spoiler: GT english text

Info
BUIKPIJNPOLI.NL the site for untreatable food intolerance.
In recent years, Buikpijnpoli.nl has gained a lot of experience in treating patients with food intolerance that is difficult to treat.
In irritable bowel syndrome, 80% of patients indicate that nutrition plays a role in the development of the complaints.
In 2016, an increased number of mast cells was found in the duodenum in a patient with severe food intolerance.
Tamira Klooker's thesis with promoter Guy Boeckstaens (Visceral hypersensitivity in Irritable Bowel Syndrome) made it known that the mast cell stabilizer Ketotifen reduces visceral hypersensitivity and improves the symptoms of IBS.
The patient's treatment with 2 mg ketotifen twice daily was so successful that she was able to lead an almost normal life again. In the literature, this picture with an increased number of mast cells was first described in 2006 as Mastocytic Enterocolitis (MEC).
After this first experience with MEC, we have now treated more than 500 patients with nutritional intolerance and a high number of mast cells in the duodenum.
In recent years, the number of medications that can improve the image has expanded significantly.
It is unpredictable which drug will work best for which patient. This can only be determined by trial and error.
At Buikpijnpoli.nl we use:
- Histamine 1 blockers
- Histamine 2 blockers
- Cromoglycates
- Montelukast
The medication must be increased slowly and not stopped too quickly to properly assess the effect. It is also sometimes necessary to dose higher than registered.
For further information see Buikpijnpoli.nl

His message that buikpijnpoli.nl got started on LinkedIn was from 10 months ago, so it looks like it wasn't the company where there was gained experience "in recent years" like the text says; The site claims: "Through years of experience with abdominal pain complaints from osteopathy within our practices (where the complaints are examined from a visceral point of view), we have gained good experiences with people with abdominal pain complaints."

EDIT: According to the buikpijnpoli page the company buikpijnpoli itself got founded in 2017. So maybe the website is new?


According to LinkedIn Otten has experience with food intolerance since January 2022. I can't access his profile as an outsider so I can't see his other work experience.

They're making some of the right noises on the ME/CFS site (video consultation, standing test) but to me it looks
a lot like a physician creating startups for a market he sees, not someone with genuine good experience, and their "treatment" to me looks like a thrown together mix of things. EDITED somewhat iffy, but now that I know more it is probably because of the text used, not because they lack experience with ME/CFS patients

The dutch version of their website is a Wordpress page and the company is called the CFS/ME center there: CVS ME MC – van onze ME/CVS patiënten verbetert 86% - and holy shit, when you copy their url, like I did, the auto-text says: "of our ME/CFS patients 86% improves." EDITED TO ADD: which is quite a claim.

It could be opportunistic targeting of a vulnerable, neglected patient population (EDITED TO ADD: but I don't think it is), or it could be a genuine attempt to help because of for example a sick relative. Maybe they've been present at symposia, and are genuinly trying to offer support, but to me it looks like these guys are not experienced ME/CFS carers, and when looking at what they do and their background, it looks very fishy to me. EDITED: I still think it doesn't look very solid atm, but the centre's predecessor had ample experience and there were actual doctors involved, see edits below:

EDITED TO ADD: it's Ruud Vermeulens CFS/ME centre without Ruud Vermeulen. There is experience there, but I still doubt if Otten is the man to supervise patient care as he doesn't seem experienced in ME/CFS (yet).

EDITED TO ADD: The old CFS/ME centre got a couple of good reviews, the last one dated May 2023. Older info lists a number of doctors involved, but it is unclear to me if they are still there. See post #11

 

[Arvo]

The Dutch website for the CFS/ME center says: "We are a center for research and treatment of Myalgic Encephalitis [!!], Chronic Fatigue Syndrome, Long Covid and tiredness."

[Wij zijn een centrum voor onderzoek en behandeling van Myalgische Encefalitis, Chronisch Vermoeidheid Syndroom, Long Covid en moeheid]

They don't even properly know what ME stands for.

 

[Arvo]

They also claimed the domain for long covid: Same website but tailored to Long Coviid patients: Long Covid Centrum

Both the Dutch CFS/ME centre website and the Long Covid centre version report that Otten started there just 3 months ago.

From the Long Covid Centre website:

Dr M.H. (Marten) Otten will become head of patient care at the CFS/ME Medical Center and the Long COVID outpatient clinic on July 1, 2023.

As a gastrointestinal doctor, Dr Otten specializes in problems with mast cells and he already works with us in his buikpijnpoli.nl.

It looks like he was attracted because of his interest in mast cell issues via buikpijnpoli.nl

The Long Covid site under "patient care" [GT]:

There is no simple cause and effect situation with Long COVID. It is a network that is set up [or: adjusted] differently. If something changes, it always has consequences in more places. For example, inhibiting the immune system makes you less safe and the same applies to the autoimmune system. A drug that inhibits the influence of the immune system can have an adverse effect on the adjustment of the autonomic system.
That is why we first map out how the body has adapted.
For example, we investigate the relationship between slowed thinking, brain fog and circulation.
In Long COVID it has been described that the blood pressure changes when standing such that the pump pressure becomes lower. This makes circulation worse. That explains a significant part of the brain fog and treatment is often possible.

 

[Arvo]

The Long Covid cente website says:

"If you call or email us, you will have contact with Ineke Vermeulen or Corine Reurts. They have been working at the CVS ME MC for more than 25 years and can answer all your questions."

The CVS ME Centrum Wordpress site says the same.

I'm not sure what the CFS ME MEC (medical center probably) is. [Edited to add: it's Ruud Vermeulen's CFS/ME Centre]


So they've been "working at" CFS ME thing for 25 years: who was their boss?

(And who are they for that matter? On a quick search, I can't find Vermeulen, and I could only find Reurts Facebook page: it lists no higher education or work, the highest education there is the ivo MAVO - which at the time was the lowest tier of the three "high school" tiers (divided by difficulty) MAVO,HAVO&VWO.
EDITED to add: This is not meant dismissively, a MAVO education is fine, what I mean is that it is a clue that the medical assistant of the ME/CFS Centre is probably not a doctor, but for example a doctor's assistant.)

(Also, after 25 years you'd think they know that ME stands for myalgic encephalomyelitis and not myaglic encephalitis.)

 

[Arvo]

With the caveat that I could be very wrong of course (I only just now started to look at this, maybe I'm missing something and it's legit?), to me this does indeed look very amateurish and rickety. EDITED TO ADD: I was wrong, and I indeed missed something, although I still think not knowing the name of the illness you're treating, making bold claims about improvement and not having any doctors listed on your team besides someone who seems new at ME/CFS treatment leading patient care looks problematic at first glance. The opening text on Long COVID reads really iffy, even if the people at the center are well-read on the topic.)


This is what they say on their research on the english ME CFS Medical Centre: Scientific research and Publications - ME/CFS-ME.EU (mecfsmc.eu)

 

[Arvo]

R.C. Vermeulen is Ruud C. Vermeulen, the author of the dutch version of the CDC Symptom Inventory for assessment of Chronic Fatigue Syndrome (CFS), which e.g. Lifelines uses to identify people with "chronic fatigue syndrome".

I don't know much about him, but he was at the CFS and Pain Research Center in Amsterdam, published articles on research on chronic fatigue syndrome and in 2001 he criticised Bleijenberg & Prins's CBT study because they did not study CFS but chronic fatigue.

It is likely there is a link with Ineke Vermeulen, the director of the CVS ME Centrum

 

[Arvo]

This is what they say on their research on the english ME CFS Medical Centre: Scientific research and Publications - ME/CFS-ME.EU (mecfsmc.eu)

It opens with "In 2003, we published our first article, reporting on our research on chronically fatigued patients. The following year 2004, our first randomized study on patients with ME/CFS was published."

That must have been reference 2:

• Vermeulen RC, Scholte HR: Rupture of silicone gel breast implants and symptoms of pain and fatigue. J Rheumatol 2003, 30(10):2263-2267

Where Vermeulen is listed as from: "Chronic Pain and Fatigue Research Centre, Waalstraat 25, 1078 BR Amsterdam, The Netherlands. rcwvermeulen@cfscentrumamsterdam.nl"

And from 2004 we have references 3 and 4:

• Vermeulen RC, Scholte HR: Chronic fatigue syndrome and sexual dysfunction. J Psychosom Res 2004, 56(2):199-201.
• Vermeulen RC, Scholte HR: Exploratory open label, randomized study of acetyl- and propionylcarnitine in chronic fatigue syndrome. Psychosom Med 2004, 66(2):276-282.

There Vermeulen is listed as from: "CFS Research Centre Amsterdam, Waalstraat 25-31, 1078 BR Amsterdam, The Netherlands. rcwvermeulen@cfscentrumamsterdam.nl" and "The second: Research Center Amsterdam, Amsterdam, Netherlands. info@cfscentrumamsterdam.nl"

 

[Arvo]

Looking around on S4ME, Ruud Vermeulen is a physician with a legit experience in seeing ME/CFS patients.

This organization looks like it's Vermeulen's CFS/ME Centre, but maybe a second beginning of it? Vermeulen himself is not mentioned as part of the team.

I love the idea of at home assessment with tools (like the team of Physios for ME recently published about), and attention for MCAS and othrostatic intolerance. But to me as a layperson the texts often read like written by an amateur who sort-of has some knowledge*, and I don't know if there is actual proper experienced medical supervision at this place.

*I can't access any of the clinic pages anymore as I type this (glitch?), so I can't give text examples.

 

[Arvo]

I made some edits in earlier posts based on additional information.

 

[Arvo]

Additional info:

On ZorgkaartNederland, a care review website, the CVS/ME Centre gets good reviews and an average score of 8.7 out of 10:
Ratings about CFS/ME center Amsterdam in Amsterdam (www-zorgkaartnederland-nl.translate.goog) (GT)

The Dutch ME gids (ME guide) has info on CFS/ME Centre, although it seems dated (like the Zorgkaart info, it has another address than the current one). This also calls ME myalgic encephalitis.

CFS/ME Medical Center - ME-Gids.net (www-me--gids-net.translate.goog) (GT)

It lists as doctors Ruud Vermeulen, Inna de Jong and o, haha, Hans Pekelharing which is unforunately translated as Pickleherring Hans. They're not part of the "our team" page on the ME/CFS Medical Centre site, so it is unclear if they are still working there.


Edited to add: according to Vermeulen's LinkedIn he still works there. It can be unupdated because Vermeulen is currently not named as part of the team.
Ruud Vermeulen - Wetenschappelijk medewerker - CVS/ME Medisch Centrum | LinkedIn

 

[MatthiasRiem]

R. Vermeulen lost his licence as a physician in 2011. F. Visser (of the Visser and Van Campen studies into OI and cardiovascular problems in people with ME), who was the cardiologist of the practice, left. Vermeulen continued working at the centre and was listed as "head of research" on their website for several years. (Director I. Vermeulen is his wife.)
Over the years, the centre has hired various physicians in order to be able to continue offering medical care and prescriptions (De Jong, Pekelharing, now Otten), with R. Vermeulen offering advice and expertise in the background, but also still communicating with patients directly.
After a newspaper article (in Volkskrant) was published on 4th June 2022 about more recent alleged misdemeanours by Vermeulen (denied by the centre through communications by his wife), several patients demanded on social media that he step back from any active role at the centre.
See also this statement from Dutch patient organisation ME/cvs Vereniging:
https://me-cvsvereniging.nl/nieuws/patientenorganisaties-verzoeken-cvs-me-mc-om-maatregelen/ (Dutch original)
https://1-me--cvsvereniging-nl.tran...r_enc=1&_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en (machine translation)
This may be the reason why he is no longer mentioned on the website.