Prof. Dr. Kenny De Meirleir And Himmunitas

by Johan on June 17, 2010

During the past couple of months several people have asked me for the contact details for Prof. Dr. Kenny De Meirleir and his Himmunitas Foundation as they do not have a website yet. The information may be incomplete because I had to rely on my own limited experience and information found on forums.

Himmunitas Foundation

The Himmunitas Foundation is a privately run clinic for the biomedical treatment of ME/CFS and is set up as a non-profit organization. The Himmunitas Foundation is housed in a nondescript building in Neder-Over-Heembeek near Brussels (Belgium), which it shares with 2 other companies.

Himmunitas

Who’s Who at Himmunitas

  • Prof. Dr. Kenny De Meirleir, MD, PhD: World-renowned ME/CFS clinical/research leader at the Free University of Brussels in Belgium, co-editor of the Journal of Chronic Fatigue Syndrome, co-developer of the Canadian Consensus Document for ME/CFS, and author of more than 600 articles. An article by Cort Johnson can be found on ME/CVS.net: Dr. Kenny De Meirleir – Man on the Move for ME/CFS (Dutch website, scroll down for the original English article)
  • Christine Tobback, dietitian specialised in food intolerances and pseudo-allergies. Website: Optinutrics
  • Dr. Kris Vollon, orthomolecular doctor.

Tests

The tests are done at the clinic after which the samples are send to labs in Belgium, Germany, USA, … The number and the type of tests will be determined during your first consult with Prof. Dr. De Meirleir. I had to go to the clinic four times over a period of a month to get all the tests done, but for foreign patients they do all the tests in two consecutive days.
There is a hotel nearby that they recommend, the EuroVolleyCenter. I have stayed there myself on two occasions when I had to be at the clinic at 8 am — Brussels has the worse traffic jams in Belgium — and it is conveniently close to the clinic. They even provide transport to the clinic.

Contact Details for Himmunitas

Address: Himmunitas
De Tyraslaan 111
1120 Neder-Over-Heembeek (Brussel)
Belgium
Telephone: +32 (0)2 266 87 40
Email: info at ehmb dot be


View Himmunitas in a larger map

Disclaimer

A lot of people found and are still finding the information I provide here, the contact information for the Himmunitas clinic of prof. dr. De Meirleir, useful.  I had to look it up myself to make an appointment and go there, so I might as well share it. However, this is not a recommendation to go to the Himmunitas clinic. I have been a patient of De Meirleir for 7 months (of treatment, if you start counting from the first visit then it is 1 year). I got worse, a lot worse. It was only after quitting that I became a bit better again. So, I cannot recommend the treatment. My 2 cents are to think it through because it is very expensive and to consider the following 2 observations (to the best of my knowledge):

  1. He will order a lot of tests and not all of them will be medically significant; meaning other doctors, even those unprejudiced towards ME/CFS, will not consider them useful or of any value.
  2. There is no biomedical (evidence-based or science-based) treatment for ME/CFS. Yes, he is a medical doctor and a professor, but the treatment is to be considered alternative (unproven at best) or even experimental.

Take care.

As it takes two to make a quarrel,
so it takes two to make a disease,
the microbe and its host.
Charles V. Chapin

{ 22 comments… read them below or add one }

Laurie August 8, 2010 at 8:41 am

Thank you very much for all these informations!
Thank you so much

Reply

Krista December 12, 2011 at 3:05 pm

Did the treatment work for you?
How are you doing now?
Was it expensive?

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Johan December 12, 2011 at 6:13 pm

@Krista,
No the treatment didn’t work, it made me much worse. After 7 months of treatment and a lot of money I quit. It took the best part of this year to recover from treatment.

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Krista December 13, 2011 at 12:08 pm

@Johan
I am so sorry to hear that. I read good and bad comments of the treatment. I want to make an appoitment but I still hesitate…..

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Johan December 13, 2011 at 7:42 pm

@Krista,
I understand, it is a lot of money and doing nothing feels too much like giving up, at least to me. If I wouldn’t have done it, I would probably be still considering making an appointment as well – as in not to leave a stone unturned. Looking back I don’t regret the tests (in general, some were useless), but I should have followed my instinct and quit after the 3rd month of treatment as things didn’t add up. It is not an easy decision to make and I live in Belgium, it was an hour and half drive.

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Amaia December 13, 2011 at 7:29 pm

Hi Johan……thanks for sharing and informing us about your experience with it,i would like to know if your treatment was with gcmaf..??…
there is Spanish guy who is taking it after Meirleir appointment and he says he’s improving a lot……¿¿?

thank you……

Reply

Johan December 13, 2011 at 8:02 pm

@Amaia,
No, I wasn’t treated with GcMAF. I sometimes hear from ME/CFS patients who know patients (indirectly) who improved on GcMAF, but the 5-6 patients I know (directly) who got treated with it experienced no improvement. I recently saw a message on Facebook that GcMAF is not without side-effects. There are 2 things to consider here:

  1. There is only anecdotal evidence on GcMAF as treatment for ME/CFS. Some improve, some experience nothing, and some get worse. There is probably no medication without side-effects. If a lot more patients improve than get worse or experience side-effects, that is good news. If more patients get worse or experience some serious side-effects than improve, that is not good. This information or evidence is not available for GcMAF. When I looked at the studies on GcMAF and cancer earlier this year (or last year) I had the impression they were not as solid as patients would like to believe.
  2. GcMAF was presented/announced as a treatment against XMRV-infection. Now that XMRV has been proven to be a contaminant, where does that leave GcMAF?

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Esther December 13, 2011 at 10:17 pm

I have been consulting Dr. De Meirleir for a little less than a year now, and have -like others before me- come to the conclusion that it isn’t worth the effort, and certainly not the money. The tests are exorbitantly expensive, not refunded by national health insurance, and, as Johan said, not always relevant. The test reports seem to mean something to DM himself, though he always tells me he has to ‘interpret’ them, but not to other doctors. He constantly contradicts himself, saying one thing during the consultation, and recommending something else in his written recommendation to my GP. He knows his own ‘stuff’ about immunity, but completely ignores all other health aspects or issues. His recommendation for thyroid hormone, for example, would have killed me. Luckily, I was on the case and consulted my endocrinologist. There is no room for dialogue, true consultation or asking questions, not even a proper anamnesis. Symptoms have to be indicated by ticking boxes on a preprinted form, which he then silently reads in the presence of the patient, rather than -God forbid- asking the patient directly. His manner is aloof, sometimes even rude, and does not inspire confidence. I suspect him of seeing his patients, not as human beings, but as potential creatures for experiments and a source of income. During my last consultation, he roundly asked me ‘so what do you want from me?’, because I had the temerity of not getting better from his treatment. He then prescribed another series of tests amounting to 730 Euros (including a 280 Euro stool analysis, which my GP can have done at a fraction of the cost). When I explained I didn’t have that kind of money, I was told simply that ‘the Professor could not help me any more’.
Fine by me, I don’t want to be ‘helped’ in this way. The only good thing about seeing DM is that when I have to see the national health doctor to prove disablement and incapacity to work, I can honestly say I have tried everything possible to get better.

Reply

Johan December 18, 2011 at 1:07 pm

@Esther,
I like this quote:

when I have to see the national health doctor to prove disablement and incapacity to work, I can honestly say I have tried everything possible to get better.

It almost sounds like a rite of passage, but you are right. After quitting his treatment I no longer asked myself the questions “What if this doctor has a treatment?”, “Maybe I should make an appointment with that doctor?”, “Should I see that therapist?”, “Should I try this treatment?” …. I had CBT, I tried out dozens of CAM treatments and now I have done the so-called biomedical approach which in reality isn’t biomedical but experimental.

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Michelle December 14, 2011 at 1:55 am

I’m trying to remember – doesn’t Dr. DeMeirleir own or part-own a commercial lab? Are the tests he orders done by this lab?

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Johan December 18, 2011 at 12:33 pm

@Michelle,
Yes, details are a bit hazy, but he (co)founded RedLabs that does a lot of his tests, he also (co)founded the lab for the neurotoxic metabolite urine test and I have seen his name mentioned with VIP Dx as well.

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Non-foe January 28, 2013 at 11:04 pm

He no longer owns any part in any commercial enterprises.
And hasn’t for many years AFAIK: http://mecfs.wikkii.com/wiki/Prof._Kenny_De_Meirleir

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Johan January 29, 2013 at 12:53 pm

You’d be surprised on how many commercial interests there are. You refer to a wiki-page you have written yourself.

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JuliaHugoRachel December 14, 2011 at 2:44 am

Hi Johan! I am sorry for your experience. Sometimes we find what we need, through what “we do not need”. I have been through many treatments, before finding tools that work for me. My son, has the same illness, yet needs different treatments. I am interested, if anyone on this board is open to discussing;what tests are being done at this clinic? Specifically what blood tests and what treatment methods are being offered? Thank You. Julia

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Johan December 18, 2011 at 12:36 pm

@Julia,
I haven’t mentioned all the tests I have done in detail, but to give you an idea I will refer you to this article: First Visit to Himmunitas and Prof. Dr. De Meirleir

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JuliaHugoRachel December 19, 2011 at 5:45 pm

I can see the potential link with Biochemsitry. I bet this will be huge with these diseases in the future.

It looks as if NO infectious pathogens are being tested for. Shame. We know the underlying factor is infectious pathogens.

I am glad it helps for some people.

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Johan January 3, 2012 at 1:17 pm

@Julia,
He does test for some pathogens: EBV, HHV-6, …

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Stelie November 14, 2012 at 11:39 pm

Sad to hear all those comment.
For me DMRL was a saver. For me the traitement really worked. It’s important to understand what the DR. do to you. Not just following the traitement without asking. It’s normal too feel worst for a long moment during the treatement. It’s almost like a chemio. Very hard to follow. But afther 3 years I began too see the really important effect of the treatement. It take time a lot of time. A time to clean your body end then to reconstruct it. It’s really worth!! :) SFC since my 12 years-Arrived at my 21 years at DMRL – Now I’m 30 and would be verry happy with my testimony to help somebody to get the good treatement

Reply

Johan November 18, 2012 at 10:52 am

@Stelie, thanks for you comment.

Some thoughts on your comment:
“A time to clean your body and then to reconstruct it” sounds more like a dime a dozen detox therapy than science/evidence based medicine.
According to literature most patients with ME became better without treatment.
CFS or ME, whatever you want to call it, is know for a cycle of remissions and relapses with months or even years in between. I myself have experienced a spontaneous remission which lasted 4 years of which I was able to work 4 days a week for 2 years.
Maybe De Meirleir’s treatment helped you, maybe you just got better by yourself or maybe you are currently experiencing a temporarily remission.
Enjoy.

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Stelie November 18, 2012 at 12:11 pm

I don’t thinks so ;)
I still have a lot of compléments to take and if I don’t take them I re-crash very easyli and re-become very ill. Inflamation crises etc… I see that people are quiet septicale in this page and I’m not here to make a debate and,I juste wanted to give hope to some people. I still ill but I’m more than sure that everything DMRL did for me helped. I did a lot of other treatement before (during 10 years). I they maked all thing going worst : )
I wish you all to get better with the treatement that fits you the best.
Kisses
Stelie

Reply

Johan November 29, 2012 at 8:18 pm

@Stelie,
OK, let’s leave it at that. It helped you and some others and it made me and some others worse.

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Non-foe January 28, 2013 at 11:05 pm

Himmunitas now have a web site: http://himmunitas.org/

Reply

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