ME/CFS MEDICAL CENTER (the Netherlands & France, also takes patients from other countries using video consultations) (2024)

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:

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 sh*t, 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

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ME/CFS MEDICAL CENTER (the Netherlands & France, also takes patients from other countries using video consultations) (2024)

FAQs

What is the prevalence of me CFS in Europe? ›

Overall, as expected [20], studies on prevalence and incidence of ME/CFS in Europe were scarce. Among the included studies in adults using the CDC−1994 case definition, prevalence estimates ranged from 0.2% [26] to 2.2% [13]. Previous systematic reviews found a similar range of prevalence estimates in other continents.

Is me CFS real? ›

ME/CFS is most common in people between the ages of 40-60 years. ME/CFS is more common in adolescents than young children. People of all income levels can get ME/CFS. Between 836,000 to 3.3 million people in U.S. have ME/CFS.

How many Americans have ME CFS? ›

According to the CDC , 836,000 to 2.5 million Americans have ME/CFS.

How many people with me CFS worldwide? ›

The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide. According to the National Center for Health Statistics (NCHS) during 2021–2022, 1.3% of adults in the United States had ME/CFS.

What percentage of people recover from me CFS? ›

Studies have shown that, on average, 5% of individuals suffering from CFS make a full recovery and almost 40% improve over time. Around 8% to 30% of sufferers find their condition improves enough for them to be able to return to the workplace. However, 5% to 20% find their symptoms become worse over time.

What is the prevalence of myasthenia gravis in Europe? ›

MG is estimated to affect more than 700,000 people worldwide [1]. European studies reported incidence rates between 0.63 and 2.9 per 100,000 person-years and prevalence rates between 11.17 and 36.1 per 100,000 persons [2], [3], [4], [5], [6], [7], [8], [9].

What is the controversy with myalgic encephalomyelitis? ›

The term myalgic encephalomyelitis has also been criticised, as the symptom myalgia (muscle pain) is not experienced by everyone with the disease. Additionally, before ME/CFS was considered a biological condition, the name ME was seen as reinforcing the illness as it “legitimised” patient's symptoms.

What happens to the brain with myalgic encephalomyelitis? ›

Brain scans during one task found that those with PI-ME/CFS had lower activity in a brain region called the temporoparietal junction. These findings suggest that the fatigue of those with PI-ME/CFS might be caused by dysfunction in the way the brain decides how to exert effort.

Is me CFS a disability? ›

Examining illness severity, explaining how ME/CFS is officially recognised as a neurological disease and disability, and providing a useful disability rating scale that can help you explain your disability to others.

What is the new blood test for chronic fatigue syndrome? ›

The new test uses artificial intelligence to analyze vibrations in a single blood cell caused by a laser. The technology used is called Raman spectroscopy, which can “interrogate individual cells,” the authors wrote.

What is the life expectancy of someone with ME CFS? ›

It should be noted that individuals with ME and CFS are reportedly dying at a younger age compared to the overall population. However, only all-cause and cardiovascular-related mortality reached statistical significance. The all-cause mean age of death for this sample was 55.9 years.

Is me CFS hereditary? ›

Genetics plus environmental triggers are believed to cause ME/CFS. It runs in families, but not in the predictable patterns of a truly inherited disease. Having a relative with ME/CFS means you are at greater risk for it, not that you will definitely go on to develop it.

What is the death rate for myalgic encephalomyelitis? ›

ONS data has revealed that 88 deaths between 2001 and 2016, and 62 deaths between 2017 and 2021, were partly or fully attributable to ME/CFS. This is a significant increase in the rate of deaths (an increase from 5.5 deaths per year to 12.4 deaths per year) in the 2 respective periods.

Is me CFS an immune disorder? ›

It is possible ME/CFS is caused by changes in a person's immune system or how it responds to infection or stress. ME/CFS shares some features of autoimmune illnesses. In these types of diseases, the immune system attacks the body's healthy tissues.

Is me CFS a neurological condition? ›

Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems. People with ME/CFS experience severe pain and fatigue associated with post-exertional malaise (PEM).

What is the prevalence of short bowel syndrome in Europe? ›

The prevalence in the United States is approximately 30 cases per million and in Europe it is approximately 1.4 cases per million (but the rate varies widely between countries).

What is the prevalence of CF in Europe? ›

In Europe, the average prevalence at birth is 1/5,000; the average prevalence in the general population is 1/9,000.

What is the prevalence of chronic conditions in Europe? ›

Chronic morbidity: long-standing illnesses or health problems. In 2022, 36.1% of the EU population aged 16 years or over reported having a long-standing illness or health problem.

What is the prevalence of chronic fatigue syndrome in the UK? ›

Report to the Chief Medical Officer by an Independent Working Group on ME/CFS. The report estimated (section 1.4. 2 Epidemiology) 0.2 – 0.4% of the population (i.e., that 2 – 4 people in every 1,000) could have ME/CFS.

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