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Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

dadouv47

Senior Member
Messages
745
Location
Belgium
Opinions on KDM are varied, but fact is he has published in peer-reviewed journals, in fact quite a few articles (source). Probably more than the average CFS/ME doctor. I would not put him in the same category as a homeopath or someone who believes in the Lightning Process etc., and yet those people are still around selling their stuff.

Yep. You can disagree with all his theories : leaky gut, treat infections (Lyme, EBV etc...) and his treatments plans (antibiotics, antivirals, supplements), but that's not really the point of the thread. All CFS specialists who are trying to treat patients have some very different approaches, that you can like/hate and trust or not. It's not like we have a magical pill and some CFS specialist can give you a treatment that has no scientific controversy.

PS : Belgium disbarred another CFS specialist last month (we don't have much left). I don't believe it's better to prevent them from working while keeping all GET practitioners, even if you don't like this particular Doctor and all his theories.
 
Messages
84
For me, the most distressing part about Dr Meileirs treatment is that it might very well be harmful for ME/CFS patients. It is clear that the disease is extremely complex and when even mental and physical exertion can worsen the disease in patients, then it should come as no surprise that treatments which alter the amount of bacteria / fungi / viruses in the body can be harmful as well.

As someone who has gotten worse from being recommended exercise, I feel that ME/CFS treatments HAVE to be based on strict scientific evidence, both with regards to positive and negative effects. This is not the case for any of Dr Meileirs treatments. The same goes for all the other doctors that claim they can treat ME/CFS.

Don't get me wrong, it is great that there have been doctors that have actually been taking ME/CFS seriously, and have been trying to treat the disease with medicine while everyone was focused on therapeutic treatments for the disease. But we need to apply the same skeptic view we apply to CBT and GET to the rest of ME/CFS treatments. We can't just pick and choose.
 
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Research 1st

Severe ME, POTS & MCAS.
Messages
768
The article is about alleged activity 8-11 years ago, dredged up by people who want to prevent publication of a cutting edge research paper that demonstrates novel forms of infections and autoimmunity exists in the majority of PWME (not Fukuda CFS). Thus it has appeared NOW, not THEN.

You guys are free to say what you want, and I support free speech, but you aren't talking in your livingroom here, it's on a public forum. So I would be cautious before posting and make sure you are thinking rationally rather than emotionally.

Comments in bold below, in my view, risk getting this forum attention, as they're potentially libellous regarding a highly knowledeable biomedical researcher and physican who is not a psychiatrist with harmful theories of patients feigning organic disease, but the exact opposite. Unlike psychiatry, KDM uses evidence based medicine. In ME this has to be experimental, as no one knows what ME is. Results in patients, thus vary between satisfaction and disatisfaction, this is normal having ME, ranging from psychological therapies to biomedical drugs that in ME, rarely work alone without years of failures as it's a mutli systemic disease process of unknown cause.

Meaning....comments like:

'Makes sense. Another ME scammer that took advantage of desperate sick people, to pedal his own line of snake oil. No wonder people on PR are skeptical, and push for published, peer review research.
by Groggy Dogg on page 1.

''Prefers to run a one-man money-making outfit.''
by Tired Sam on page 1.

'' I feel that ME/CFS treatments HAVE to be based on strict scientific evidence, both with regards to positive and negative effects. This is not the case for any of Dr Meileirs treatments''
by Rick Sanchez on page 2.

Are not helpful. I say this as anyone familar with Himmunitas knows you have extensive testing in Brussels, then KDM devises a plan for you based on the results.

So please dont risk access to this forum being stopped for everyone else who desperately needs it for their mental as well as physical health. All it takes is one person to see them, report them and you're toast or the entire forum is toast if the moderators don't act.

Thank you.
 

Groggy Doggy

Guest
Messages
1,130
Hi @Research 1st

I read the translated articles, and formed an opinion. So you are saying that KDM is not being investigated by the Belgium government? I am not clear what data in the articles you are disputing? I am not familiar with the laws in Belgium, nor their statute of limitations. But if someone commits a crime, and the statute of limitations has not passed, I thought that one can be brought up on charges for past behaviour?
 

Groggy Doggy

Guest
Messages
1,130
You guys are free to say what you want, and I support free speech, but you aren't talking in your livingroom here, it's on a public forum. So I would be cautious before posting and make sure you are thinking rationally rather than emotionally.
I think its fair to express ourselves, here on PR, in the same way we did about the PACE researchers. Are you saying we need to have a double standard?
 

dadouv47

Senior Member
Messages
745
Location
Belgium
I think its fair to express ourselves, here on PR, in the same way we did about the PACE researchers. Are you saying we need to have a double standard?

Nope. You can criticize him as much as you want for what he does (or did), said, believes in etc. But you don't have enough evidences to claim ''Another ME scammer that took advantage of desperate sick people, to pedal his own line of snake oil.''
 

Groggy Doggy

Guest
Messages
1,130
Nope. You can criticize him as much as you want for what he does (or did), said, believes in etc. But you don't have enough evidences to claim ''Another ME scammer that took advantage of desperate sick people, to pedal his own line of snake oil.''
Done :)

(Unfortunately I don't know how to use the strike thru font)
 
Messages
15,786
I read the longer Apache article, because the short ones were completely unclear about what the actual charges are. As near as I can tell, the problem is in importing Nexavir, 10 or so years ago.

From my understanding, the article covers a lot of ground. It states that the etiology of CFS is an "emotional" topic, and questions whether it's a psychological illness. They seem to be saying that he's connected to all of the companies/products involved - fairly sure he's got nothing to do with ProHealth though.

Most of it is quite old. XMRV testing (which was experimental albeit sensible at the time), the Th1/2 urine test which is no longer used. They're insinuating that he was involved in the contaminated samples at Whittemore Peterson in Reno, Nevada, because he became their medical director years later :confused:

They're also implying that Kalida is making a lot of money selling Nexavir - though when I was buying it (as 4ME), the price was actually cheaper than the other brands. And the other brands were not available at all in Europe.

They publish some responses from KDM, and one makes it clear that he was never involved in laboratory research - that was Judy Mikovits. She did ask him for blinded samples from patients and controls to verify the results in a European sample. He says a group from Cornell also reported finding XMRV.

In 2013 he was the lead author in a paper published in the journal "In Vivo" where they found abnormal dendritic cells in the small intestine of patients were producing PGE2 and were associated with the spewing of fragments of endogenous retroviruses. 8% of our DNA consists of retroviruses. He took that this was what Mikovits found, and not a fully pathogenic retrovirus.

KDM then says that RED laboratories was founded in 1998 by 12 scientists from France, Belgium, Germany, and the US for the development of diagnostic kits for chronic immune diseases. KDM was never involved with the management, and it was accordingly not a laboratory for clinical analysis.

In 2003-2006, RED slowly developed into a clinical laboratory for highly specialized tests which were not available from routine laboratories. He has NEVER (1998-2017) had a direct or indirect income from RED laboratories. I think it says he was on the board of directors or similar, but not in the past 10 years.

Biored is also a collaboration between 12 scientists. He has never had income from it, and has not been on the board in the past 10 years. REDLABS in the US is fully in the hands of an American businessman, and is a non-profit. He has no financial connections to it.

KDM says isn't aware that Protea Nutraceuticals even exists. He has had no connection to it or profit from it. He has no connection with Protea Biopharma beyond having contact with them due to a family motivation which is "none of your business".

He says he's not (directly) involved with Kalida, and does not profit from it. The journalist repeats that KDM's wife is involved, and says that Protea Nutraceuticals was located at the same address as Kalida.
 
Messages
15,786
Being on boards isn't a financial interest. Board members don't get paid. But the journalist does criminal stuff, so probably has little clue about the business aspects.

The journalist also doesn't seem to understand (or ignores) that developing tests and treatments is normal and even necessary in a private health care system. It's especially the case for a researcher and clinician dealing with a disease which has no existing recommended treatments or methods for diagnosis.

I don't know if there were technical legalities regarding the importation and/or sale of Nexavir, but the business relationships and board memberships seem pretty standard. Research-oriented clinicians don't simply sit on their butts and follow a checklist to treat patients - they innovate.
 

A.B.

Senior Member
Messages
3,780
What de Meirleir is doing is indefensible. No surprise he is in legal trouble.
 
Messages
84
The article is about alleged activity 8-11 years ago, dredged up by people who want to prevent publication of a cutting edge research paper that demonstrates novel forms of infections and autoimmunity exists in the majority of PWME (not Fukuda CFS). Thus it has appeared NOW, not THEN.

You guys are free to say what you want, and I support free speech, but you aren't talking in your livingroom here, it's on a public forum. So I would be cautious before posting and make sure you are thinking rationally rather than emotionally.

Comments in bold below, in my view, risk getting this forum attention, as they're potentially libellous regarding a highly knowledeable biomedical researcher and physican who is not a psychiatrist with harmful theories of patients feigning organic disease, but the exact opposite. Unlike psychiatry, KDM uses evidence based medicine. In ME this has to be experimental, as no one knows what ME is. Results in patients, thus vary between satisfaction and disatisfaction, this is normal having ME, ranging from psychological therapies to biomedical drugs that in ME, rarely work alone without years of failures as it's a mutli systemic disease process of unknown cause.

Meaning....comments like:

by Groggy Dogg on page 1.

by Tired Sam on page 1.

by Rick Sanchez on page 2.

Are not helpful. I say this as anyone familar with Himmunitas knows you have extensive testing in Brussels, then KDM devises a plan for you based on the results.

So please dont risk access to this forum being stopped for everyone else who desperately needs it for their mental as well as physical health. All it takes is one person to see them, report them and you're toast or the entire forum is toast if the moderators don't act.

Thank you.

I have studied law, and you clearly do not know what you are talking about.

Secondly, regarding my comment.

KDM has absolutely NO sound evidence that his treatments work. Please inform me of how many of his treatments have showed significant results in a double blinded trial with a high number of patients?

There is nothing that I hate more than when desperate ME/CFS patients are being taken advantage of. Instead of using all our money to fund research, way too many patients are using what little they have on snake oil. What is worse, the snake oil KDM uses might actually harm patients. This isn't just guesswork, a lot of patients have reported harmful effects after treatment with KDM. Could some of the treatments KDM applies actually end up helping patients? Sure...They might... Just like bloodletting and leeches might help us... (doubtful)... but he has absolutely no proper scientific evidence to back it up thus far.
 
Messages
15,786
KDM has absolutely NO sound evidence that his treatments work. Please inform me of how many of his treatments have showed significant results in a double blinded trial with a high number of patients?
There are plenty of studies showing that antibiotics are effective in people who have tested positive for bacterial infections. And that immune-modulators are often effective in people with documented immune dysfunction. And that digestive enzymes are appropriate for people with food intolerances. Or do you always demand additional research if the patient has ME in addition to those problems?
 
Messages
29
Location
Belgium, Flanders
I find it hard to understand why the article on Apache (the source for the newspaper Het Nieuwsblad) was published on 4 Oct. The law suit investigation concerning Nexavir started around 25 Sept, so it is hardly 'hot' news.

Furthermore it doesn't treat extensively the treatments nor the disease. The focus is definitely on the financial and juridical constructions around his hospital.
In my opinion that is not the most relevant story at this moment in the world of ME/CFS.

But the journalist has of course a free choice of subjects to write about. That's why the timing of the publication of the article is very questionable. On the same day (4 Oct) a Dutch Lyme patient of KDM has won her case in court regarding the treating according to the ILADS-protocol, which is not the common guideline in the Netherlands, to be reimbursed by her insurer. On 5 Oct there was the appeal. (I'm not aware of the decision yet).
https://eenvandaag.avrotros.nl/item/lymepatienten-strijden-voor-vergoeding-door-verzekeraars/

I cann't but believe this court case and the article on Apache somehow are connected. But other than the 'timing', I have nothing substantially to proof it. Just a feeling...
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
He has his supporters on PR so I've learnt not to go on about it, but I completely agree with you. Sends patients for expensive tests to labs where he has a financial interest, then sells them "treatments" in which he has a financial interest. Seems to prefer taking out patents to publications, which is a shame because his ideas can never properly be scrutinized by the M.E. scientific community. Prefers to run a one-man money-making outfit.
I cannot even begin to say how wrong you are on all counts. Does anyone remember when Dr Myhill was repeatedly persecuted by the GMC and nearly lost her license? And countless other Drs who work with PWME in the UK and Europe. The charges against Myhill were trumped up too and thrown out three times. This is very similar.

It makes me really angry when people judge others without proper knowledge, just based on hearsay and newspapers - which we all know are biased one way or another.

Yes, I am a patient of KDM, but im a unique position because he hasn't helped me at all -in fact if anything I had a bad experience at his clinic and probably wont be going back so im not a no 1 fan. However in the years I have been a patient of his I have seen nothing but kindness, empathy and compassion. I have spent a lot of time at the clinic and I can categorically say that he does not rake in the money.

His clinic is run as a non profit - it doesn't even make enough money to pay all its employees so KDM pays out of his pocket. The building is in need of repair, but there is not the money to do it. The man is a workaholic who never stops working to try and help as many patients as possible.

It is a long standing rumour that he 'owns' or has a financial interest in Redlabs in Belgium. This has never been the case. He makes no money from the testing that he does on patients, for which he uses a number of different labs.

I understand that his wife has been on the board of Kalida - she is/was a board member and did not take a salary for her role. 4ME can be brought from Kalida, but Nexavir could be brought elsewhere, at a much higher cost. KDM does not push his patients to buy from any particular place. In fact he is far from pushy with anything - respecting his patients views on which treatments they will or will not have. same goes for testing, no one is pushed into testing they don't wasn't or cant afford. If I told him I was short of funds he wouldn't order any testing for me at all.

When I had Iv treatments at the clinic I will tell you what I paid.
I paid for the myers cocktail of supplements, I paid for the glutathione at cost price to the clinic. The they added on 15 euros. This 15 euros covered three hours of nurses time, the saline, the tubing, the needles, the sterilisation equipment and a nice warm room with comfy lay back chairs for me to sit in. Oh and you can plug your laptop in to charge it up and there is free chilled water - hardly someone who is running a money making operation.

Compare that to many other clinics set up to treat people with M.E or Lyme and you can soon see they are not in it for the money.

I personally did not get better, but his clinic is literally bursting at the seams with people who are getting better/have improved a lot and owe him their lives. Most are Belgian, French, Dutch so you wouldn't meet them here. I have spoken to and met so many. One lovely couple took me out in my wheelchair to the park for a walk - and they could drive there, walk around and chat while I was slumped in my wheelchair - they even pushed me.

I'm so sick of the invective against him round here that Drs Montoya, Kaufmann, Peterson, Klimas and other treating clinicians don't get. Why is that? He doesn't do much that is different to those Drs - prescribes much the same medicines, does much the same testing, has as high a standing in the medical community and research worlds, was a co author of the ICC definition. Really what is it all about? I really want to know?
 
Messages
15,786
I'm so sick of the invective against him round here that Drs Montoya, Kaufmann, Peterson, Klimas and other treating clinicians don't get. Why is that? He doesn't do much that is different to those Drs - prescribes much the same medicines, does much the same testing, has as high a standing in the medical community and research worlds, was a co author of the ICC definition. Really what is it all about? I really want to know?
I think the difference is that he's doing it in Europe, where socialized medicine has resulted in a very rigid process which most doctors follow. What he's doing would be (and is) completely normal and unremarkable in the US.

Socialized medicine is mostly a great thing. But private doctors exist in Europe precisely because the needs of patients are sometimes not met. This is going to happen most in rare or emerging disease where there are no checklists to follow aside from the ones involving useless gestures like CBT and GET.
 

Solstice

Senior Member
Messages
641
What de Meirleir is doing is indefensible. No surprise he is in legal trouble.

Can't speak for anyone else, though I did meet some people irl and on dutch M.E. forums who went back to work, playing sports and having a social life.

In my own particular case I got a bartonella diagnosis which was spot on. I have the typical bartonella-rash to prove it. And about 2 years ago when I was feeling so ill that I thought I might end up in hospital, he fixed me up to the point that I can now sit behind my computer for several hours a day again and most weeks am able to do a few social activities. The extreme dizzyness has subsided so far that I rarely experience it anymore, my sleep went back to relatively normal(far from great though) and the feeling of not getting any air up to the paint where you feel like you're dieing is mostly under control.

All this doesn't mean I'm cured, but I do owe him a debt of gratitude.
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
KDM says isn't aware that Protea Nutraceuticals even exists. He has had no connection to it or profit from it. He has no connection with Protea Biopharma beyond having contact with them due to a family motivation which is "none of your business".
He says he's not (directly) involved with Kalida, and does not profit from it. The journalist repeats that KDM's wife is involved, and says that Protea Nutraceuticals was located at the same address as Kalida.

He's not only bad physician but also liar! (either that or he is senile and lost his memory)

Together with his "treatment plan" I was pushed Product ordering form for expansive supplements by Protea Nutraceuticals B.V.. This was done personaly at his clinic and also I got it in letter with his results on numerous occasions! Protea Nutraceuticals had same adress as Kalida. At some point change has occured and names were changed. Suddenly Product ordering forms I was getting were from Kalida, text remained same, lists looks almost same. At first they had same adress but they changed that recently (to Maastricht).
I can scan and upload all this evidence online.

That he/his family is making money on supplements is very common with this type of "specialists" so not suprising at all and most people know it beforehand. I didn't have to buy from them as many will argue. But If someone was too sick to research sellers and prices online he would buy from them because patients trust him. I did too in the beggining. The worst loss for me isnt money. Although he got from me huge amount of money through various channels but the damaged helath he caused me. He enjoyed his monopoly in Europe as all other CFS-doctors were in US at the time or didnt accept new patients.

Also he owned shares of Redlabs as he was co-founder. Maybe he didn't get money directly but he surely did when he sold his shares.

I'm more surprised that they haven't taken his license for malpractice with long terms antibiotics without proof of infection or with unapproved tests as only evidence for such infections. Problem is that most damaged patients don't have energy and money for civil lawsuits which would take years with uknown outcome.
 
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Messages
29
Location
Belgium, Flanders
Socialized medicine is mostly a great thing. But private doctors exist in Europe precisely because the needs of patients are sometimes not met. This is going to happen most in rare or emerging disease where there are no checklists to follow aside from the ones involving useless gestures like CBT and GET.

Although I agree with this and it is the core of the problem with our disease, the article in Apache (source of the newspaper cf my posting above) has nothing to do with healthcare or treatment choices. It's all about politics. If you don't follow the guidelines as a doctor in Belgium (being bad medicine or not), you are a victime of the system. You are suspended or subject to law suits by the system or by the insurers (not by the patients!).

In Belgium, being a founding father of the European Union, as a patient you are not allowed to order prescription medicines abroad, you have to pass by the pharmacist's circuit. For a simple ABx, which is used in Italy for instance to treat diarrhea, you pay in a Belgian pharmacy triple the price of what you pay in Italy. To protect the healthcare system, so to say...

With this in mind, it is no so hard to believe for me that the 'financial' constructions KDM is prosecuted for, are mainly intended to help his patients, nothing else...