First Visit to Himmunitas and Prof. Dr. De Meirleir

by Johan on February 7, 2010

Almost exactly 8 years after my diagnosis with CFS in an official clinic, the CFS Reference Center in Gent, with an exclusive psychosocial approach to ME/CFS, I visited a biomedical clinic: the Himmunitas Foundation.

Himmunitas Foundation

Himmunitas vzw is a non-profit organization for diagnosing and treating ME/CFS patients. The acronym vzw stands for the Dutch expression vereniging zonder winstoogmerk, meaning that it is recognized non-profit organization. The clinic is situated in Neder-Over-Heembeek, near Brussels in Belgium.
It is a white, nondescript building with only a ground floor. The only indication of the occupants of the building are the plates for the 3 organizations/companies on the mailbox. Inside the building the furnishings are very sober and there is a communal reception area. The philosophy behind this minimalistic and cheap approach is that all luxury must eventually be paid for by the patients. I appreciate this kind of thinking.

Kenny De Meirleir

Kenny De Meirleir

Kenny De Meirleir

Professor Dr. Kenny De Meirleir is very (in)famous for his expertise on ME/CFS. He has strong supporters and detractors. People who are grateful to have improved or cured and people who consider everything he stands for to be a scam. Based on reading a lot of articles and forums the last couple of months I have the impression that he is much more respected abroad than in Belgium. This can be partially explained by the fact that the psycho-social approach to ME/CFS is the official and dominant approach in Belgium. It is also not unusual for Belgians to look down upon fellow countrymen who stand out in a crowd. We even have two expressions for it. For those of you who know Dutch:

  • Geen sant in eigen land.
  • (Met het hoofd) Boven het korenveld uitsteken.

It is not unusual for artists, managers, … to make a career abroad before receiving, if any, respect in Belgium.

I decided to ignore all of this for my first encounter with the professor. My first impressions: Prof. De Meirleir is a friendly man with a soft voice. He is also reserved and non-committal. As an impatient patient with lots of questions this feels a bit disappointing, but from a medical and scientific point of view it is the only sensible approach. He must get the opportunity to review my medical dossier and study the results of the tests before being able to diagnose me. After all, what is another 3 months of waiting compared to the 8 years that I have this disease? He did say that my symptoms seemed to match the criteria, referring to the Canadian Consensus Document to which he contributed.

Tests

The consult and tests that are scheduled for March and April are:

  • Lactose Hydrogen Breath Test
  • Fructose Hydrogen Breath Test
  • Blood tests (lots, have yet to look up all the acronyms)
  • Stool/faeces test
  • H2S test
  • Immunofenotype
  • Allergy tests
  • DMPS & Zn-DTPA test
  • Consult with Dietician
  • Exercise test

Two days after the first consult I received a letter with the details of the blood, stool, allergy and DMPS tests. Total price approximately €2100, depending on the conversion rate between the dollar and the EURO. For these test I will not recieve any refund by my healthcare provider. Not included in this price are the consults, the hydrogen breath tests and the exercise test for which I will receive partial refunds by my healthcare provider. My estimate last year for these tests, consults, and travel expenses was between €2000 and €2500. I guess it will be between €2500 and €3000 now. The difference between my estimate and the actual amount can be blamed on 1 test. The most expensive test accounts for no less than one fifth of the total price of the blood tests: the test for XMRV. I have mixed feelings about this one.

My arguments in favor of taking this test are:

  • to be sure (but of what)
  • to support the advance of science

I am willing to support the advance of scientific knowledge. I am a Master in Industrial Sciences in Biochemistry, and I have contributed numerous hours of volunteer work for nature and environmental organizations. I still contribute, but not as much as I would like. But is that really worth spending between €390 and €450 and to what purpose? Does XMRV really exists in humans? One study, the most thorough one, found a possible link between CFS patients and a newly discovered human retrovirus XMRV, but at least 3 other studies, 2 for prostate cancer and 1 for CFS, failed to find any trace of the retrovirus. The first study done by WPI found 66% of the CFS patients infected with XMRV based on a PCR test. Some additional tests (antibody positive, protein expression, and transmissible virus in the plasma) done by WPI increased the number of infected patients to 95%. What does the commercial available test include? Only the PCR test or also the additional tests? The PCR apparently gave false negatives for one third of the infected patients.

My arguments against taking this test are:

  • it’s expensive
  • very little, almost nothing, is known of the significance of XMRV on human health
  • there is no approved test available,
  • if only the PCR test is done, what does being XMRV negative mean
  • if tested XMRV positive what does it mean

The tests aren’t mandatory. I can choose to skip some of them. For most of the tests I have no objections; I want them to be done. I am tired of hearing that nothing is found in blood tests while I am clearly allergic, intolerant or overly sensitive to certain foods. So I am looking forward to the tests, even though I realize that they are expensive and that some of them will leave me wasted afterwards. I just have doubts whether it is sensible to do the XMRV test. I think I have 3-4 weeks to make up my mind about the tests. What would you do? Would you include the XMRV test?

My next appointment with Prof. Dr. De Meirleir to discuss the results of the tests and hopefully a treatment plan is in the first week of May.

Location, Location, Location

I am very grateful that my father drove me there. I don’t think I would have made it on my own either by car or by public transport. I try to limit the time I spend on activities to less than one hour; like working on a computer in 30-45 minute shifts, birdwatching never last longer than 1 hour (incl. bicycle ride), cycling as cardiovascular exercise lasts between 30-45 minutes, … If I would have gone to Himmunitas using public transport I would have needed close to 3 hours (bus, train, tram, bus) to get there. Include the consult and the return trip and it would be close to 7 hours for a 15 minute consult. It only took 80 minutes by car to get there, and the entire trip lasted 3.5 hours. But the appointment was at 11.15 am. Some of the following appointments are at 8.00 am and then it will be almost impossible to get there by car. The highway Ostend-Brussels, especially the part between Aalst and Brussels has the worst traffic jams in Belgium. Even though the clinic is only 106 km (66 miles) from my home, I will probably have to find a hotel near the clinic to spend the night before the next two appointments.
People living near Brussels, or in the provinces Antwerp and Limburg have better access to Himmunitas.

Roadtrip

The trip to Himmunitas made me realize how much freedom I have lost. On my own I can get everywhere in my hometown Ostend using my bicycle. Doing things myself gives me a feeling of satisfaction, a sense of accomplishment, but during the trip I saw how much freedom has been taken away from me these past years. My world has become very small and the virtual world of the internet is no real substitute.
I sometimes regret selling my car in 2005, but it was the best decision. Not only is having a car very expensive, I was also facing some expensive maintenance works in 2005, and I only had a limited use for my car; I didn’t feel comfortable driving when feeling very tired or dizzy.
Along the trip memories came back: if I take this exit it will take me to a forest, I used this exit when I worked in Deinze, I used this exit to go to Halle, I used this exit to get to my apartment when I still lived in Gent, … I want my freedom back.

P.S.: I saw 7 Common Buzzards along the way and there were several large concentrations of geese, most likely White-fronted Goose and Pink-footed Goose, just outside my cycling range in Oudenburg. ;)

What do you think? What would you do in my place? Do the XMRV test, buy a Wii Fit, buy an iPad (just kidding), or leave the money in my savings account?

Freedom is precisely the state of not having to choose.
Krishnamurti

{ 19 comments… read them below or add one }

Linda Vansteenwinckel February 7, 2010 at 12:54 pm

Good blog post again, Johan. Moreover, one of the very useful kind for fellow-patients…Thank you so much for that.
In my opinion, this is such a good test panel. I did not consult with De Meirleir myself in the early 90′s, I’ve had to travel many km’s at that time, and spent 2 to 4 years alltogether to have access to the right diagnostics. So in a way you’re ‘lucky’, first, to have all the right tests combined, and second, to be in the hands of one of the most knowledgeable people on ME in the world….
In my opinion, eradicating hypersensitivity reactions, to foods and other stuff, often is the first gateway to start recovery. Bloods, stools, exercise testing,…of course… all very necessary and useful. Through the results of this ‘test battery’ you will obtain an action-plan (diet, supplements, medications) tailored to your specific needs. I have seen many of De Meirleir’s prescription schemes, and I assure you they are very focused. It will take time, but, if you stick to the scheme, and keep adjusting it every few months after follow-up testing, you will get better! Slowly but surely. Miracle cures for ME don’t exist, but I am a very firm believer of this approach.
More money will be involved (more testing, supplements, medication, etc… not cheap at all) but it is absolutely worth it. I went through it myself, and, although I never recovered completely, I regained a much better quality of life, and that’s the only thing that counts.
I understand those complaining of the cost of the whole testing and treatment plan. It is indeed extremely unjust that very sick people, often on very low incomes, are denied access to effective treatment because of the high cost. I sincerely hope this changes. But, for now, those who can afford it, should realize the high ‘value’ De Meirleir is offering. There is no other way, as long as certain testing and medication is not covered by health insurance.
As to XMRV-testing: I share your doubts. Some people just want to ‘know’, and I can understand that, because it is a further legitimation of their illness state. But, whether you test positive or negative (and I even dare to doubt the quality of tests for the time being), up to now, treatment options remain exactly the same! And that’s the whole point I think. So, at this time, I choose to keep my money in my pocket.
I so recognize your ‘roadtrip’ story, went through the experience and emotion myself, at several times. Keep believing your world will grow bigger again… I so wish you all the best!
Linda

Reply

chris February 7, 2010 at 9:13 pm

De Meirleir is good. You are lucky to see him. He is one of the best and he is in contact with other doctors. I would follow what he suggests. I would continue to go and see him. The time for you to get better is now. If you wait the chances are that you will get worse. People forget that this illness can get worse. You can get better now. It might be expensive, but it will be worth it.

Chris

cfspatientadvocate.blogspot.com

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Johan February 8, 2010 at 7:57 pm

Hi Chris. I did get better on my own before, but the methods don’t seem that effective anymore so I could use some help this time.
Would you recommend doing the XMRV test now, or wait? There are plenty of other tests, for which there might be treatements.

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Dominique February 8, 2010 at 3:49 am

I agree with Chris. The time to get better is now. I have been ill for 20+ years and this the past 2 years changed for the worse. I really struggle to function outside the 4walls of my apartment.

I, personally, would not do the XMVR test. Like you said, to what value would it be. If you have it, there doesn’t seem to be anything they can do about it…yet. I would go for the savings account.

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Johan February 8, 2010 at 7:42 pm

Yes Dominique, the time to get better is now. I am a bit surprised how many patients wouldn’t take the expensive XMRV test.

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Mac Angel February 8, 2010 at 8:48 pm

Hi Johan,

It is always good to have all of these tests done and yes, unfortunately,
for us the long suffering ill that have little if any medical coverage,
these tests are VERY expensive.

One thing I CAN tell you is that IF you had the your XMRV test sent to
VipDx than they are now ONLY doing the Culture test used by WPI
and it is ALWAYS BEST to take it when you are IN an ACTIVE Flare…
THAT is when the XMRV will show up and infect other cells in the culture…
and then give you a Positive test result…thus assuring that there
are NO “False Positives”.. more like a Pregnancy test…

Also a reminder that the Major Study that the announcement of XMRV
was based on last October, was a collaborative effort of 3 medical research labs
of HIGH reputation and not ONLY one lab.. they all used the same techniques
and the same blood samples over a 6month Study and made SURE the tests
were “Legitimate Replications”…
THAT was WHY it was Such a BIG deal and was then published in Science.
The Cleveland Clinic AND the National Institute of Cancer AND the Whittemore Peterson Institute
ALL Participated.. They are all located in distance locations from each other and
they used blood samples from many long time well documented ME/CFS paients
saved from many Dr’s all around the world. Even the frozen blood from one patient
that was 20 years old was viable and produced a Positive result.
The current question is yet to be studied.. IS XMRV “THE” Cause of ME/CFS or
is it there first and weakens your immune system that then lets your system
be vulnerable to the many illnesses that they feel might be associated with it
…giving rise to the term XAND. As I am NOT in a current Flare I am waiting
to have my test done, but IF and WHEN I Flare next.. I will have the test done ASAP.

In addition, there is the question of treatment after wards and how much time (years)
and energy you have have left to use… after 22 years of this I don’t have much
energy left.. and I acquired it rather late in life so it would take a LOT to help me
at this point.

Regardless of whether you have XMRV, BIG PHarma still has to tinker with
existing retrovirus meds and see if they can come up with one that will be successful
in short order.. They say the Hopes are good.. But I am NOT betting on it being
cheap or curing everything.. If you have XMRV and Fibromyalgia.. the meds may
kill the XMRV but I seriously doubt it will eradicate the Fibromyalgia..
My gut tells me the same about ME/CFS… We will STILL need to treat
the Secondary Illness we have.. lucky if there is ONLY one..
So treating all of the secondary illnesses NOW and getting as
functional as possible is always recommended..

The most well received treatment I have heard of to date, “accepted” by the body,
with practically NO negative side effects, that seems to be CURING ALL OF the Ailments
….. is “stem cell implants/infusions.”
I have personally been in contact with a number of patients that have had
MANY illnesses and have received stem cells from different places
and depending on how long they had been ill and how old they were..
“that” determined how many implants/infusions they would ultimately need.
Let me just say that 2 different patients.. one with the cardiomyopathy
and many other medical problems over a 25 yr period has had 3 treatments and
Feels SO much Better.. ALL allergies gone, heart problems fixed plus many other..
Another patient that was slipping FAR into dimentia already after MANY years..
has had only 2 treatments and can NOW live alone and go alone to
the treatments.. where Before they needed FULL Time assistance..

As the Chinese curse says… we SURE live in Interesting TIMES…..
Miracles ARE happening… We DID get the CDC to “Remove Reeves”
from being in charge of CFS at the CDC… and Many of the GREAT Minds,
Researchers and Advocates for ME/CFS will be getting together in the
next few months.. I feel this next year will be History making for us.
May we ALL Bloom and Thrive…

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Kathy D. February 9, 2010 at 6:38 pm

I’d not heard there were tests not supporting xmrv as a probably cause of CFS. I only saw the article in Science which was all over the US press. Nancy Klimas seems to support this although says further tests are needed.

Never heard of stem cell infusions. Wonder how I’d get my insurance company to pay for this–if it’s not generally authorized.

On food allergies, do you really need tests? I find myself more and more allergic to foods related to things like spices and herbs, related to molds and in allergy season–forget it; I just stay away from a lot of foods by experience, even toothpaste, none with fennel, back to regular flavored. If the smell of a food bothers me or causes my chest and throat to tighten just smelling it or with one bite, I don’t eat it. Find the basic foods you can eat, eat them and forget the rest for awhile.

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Mac Angel February 9, 2010 at 7:22 pm

@Kathy~ as it said in the Science article… it stated that “a Link has been established”
between XMRV and CFS. That is NOT the same as saying that it IS “The” Cause…
Everyone agrees that many more tests need to be done…
BUT, with that said.. MANY of the researchers also quietly feel that XMRV
just “might be” the cause.. but can’t say anything until the tests verify it.. ya know?

In the USA because of the past “wishes” of our past President
NO stem cell treatments are covered by Insurance as they are ALL
considered experimental at this point..

I agree with you about allergies, but some folks have SO many
they can’t see the forest for the trees and have no idea where to start…
and some aren’t as “sensitive” to realize when they are allergic immediately to something..
The Stem cells are curing ALL allergies tho ;-) and these other issues..

Did I tell ya that Dr Mikovits of WPI and Dr Cheney that uses Stem Cells
are meeting tomorrow Wed. 2/10/2010 and will have a LIVE webcast at 6pm GMT
at this url: http://www.cheneyresearch.com/live

*cheers*

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Mac Angel February 9, 2010 at 7:28 pm

I forgot for Reference to post this….
and by the way… I have been in contact with the patient listed in the 2nd section..
After being literally considered having Dimentia.. and needing assistance..
She is now ~SO Happy~ to have her Brain Back… What does THAT tell ya?
http://www.cheneyresearch.com/category/subscribers/stem-cells

*cheers*

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agneessens jennifer March 5, 2010 at 9:18 am

hallo wie heeft er de test bij demeirleir gedaan dmps/zndtpa test gedaan wat voelde je na dien ben savonds beginnen hoofdpijn te krijgen misselijkheid super slap gevoel zo erg vermoeid dat ik al geslapen heb om 19 u savonds vanmorgend opgestaan nog steeds hoofdpijn beresies dat je tegen een muur gelopen hebt .
zou graag weten van anderen dat ze dit ook na hun test hebben gevoeld .
vandaag naar dieetiste gaan en uitslag in de maand mei ben eens benieuwd groetjes sterkte aan iedereen van jennifer

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Johan March 6, 2010 at 11:19 am

Hoi Jennifer. Mijn DMPS test is gepland voor 25/03 dus ik heb er nog geen ervaring mee. Ken je ME(CVS).net (http://www.mecvs.net/index.html)? Vriendelijke forum en er zitten redelijk wat patiënten van De Meirleir op, dus je zult waarschijnlijk snel een antwoord krijgen.
Groetjes,
Johan

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Rutt April 3, 2010 at 5:24 pm

Hi
I am a norwegian ME patient following Prof. De Meirleirs treatment. He told me that if I got XMRV, he could treat it with a protein that “turns of” the retrovirus. That will stop the replication and make the symptoms better.
Regards
Rutt

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Johan April 3, 2010 at 6:49 pm

Thanks for sharing that Rutt.
I still find it too early, the retrovirus was discovered only 6 months ago, the findings aren’t confirmed, and nothing is known about the effects on patient’s health. I don’t think a treatment is on the radar yet.

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Laurie August 8, 2010 at 8:58 am

thanks a lot for your feedback. I hope to see him one day!
your informations are so crucial to me…!

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Mac Angel August 9, 2010 at 1:23 am

FYI~ recently those that have tested Positive~ some are experimentally already taking
1-3 different RV drugs with mixed results… since this is all early…
but some of them ARE feeling Better cuz it IS killing the RV..
Some don’t have Years to wait.. and need to squash what they can NOW.
…even tho later Trials and testing might so the “more perfect cocktail combo of Rx’s”…

Also, the International Symposium of Researchers is taking place at WPI
not his coming week, but the following week, just before their Grand Opening..
with the 1st International XMRV workshop to follow shortly thereafter Sept 7 & 8
at the NIH.. and meanwhile we await the Alter NIH/FDA paper….

With the Departure of Dr Kerr and what’s happening to Dr’ Myhill and 2 other Dr’s
and now the CDC is also pulling the BS of wanting to do some studies with meds
“ON Children” like the UK wanted to do with the “Lightening Process”
something needs to be done to HELP these children and protect them from the CDC ~ASAP.

Me thinks the Flashpoint is about to reach Ignition………..

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Johan August 9, 2010 at 9:13 am

The initial research hasn’t been confirmed yet, let alone there is a proven causal link. The most promising testsresults came from in vitro experiments, not in vivo. There is this group of patients, incl. a doctor, who took RV drugs, but I wouldn’t call the results positive or hopeful. Some people start to feel better after taking a sugarpill. Haven’t seen anything that is really convincing, whether is is proving or disproving the initial WPI study or treatment-wise.
I will have to decide in 6 weeks time to either take the XMRV test or not, so I hope some good research papers will be published in the meantime.

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Mac Angel August 9, 2010 at 9:28 am

Johan~

I did NOT state that causal had been proven.
I stated that those taking the RV’s were doing it “experimentally” with mixed results…
I am not ONLY referring to the Dr. that is taking them..
I belong to another Forum where others are ALSO taking them..
With RV’s most are concerned about the Nasty Negative side-effects also..
I was Just providing INFO…
I was NOT advising or promoting Anything..OK?

Beyond that I was just giving info about upcoming Events..

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Johan August 9, 2010 at 9:53 am

You were not only referring to the dr. that’s taking them, but neither was I.
You did not state that the causal link was proven, but wrote that some of the XMRV+ patients who take anti-retroviral medication feel better because it’s killing the retrovirus. That sounds pretty causal to me.
I am aware of the upcoming events and I really want some solid information, but after a year of smoke and mirrors, or is it cloak and dagger, I don’t want to raise my hopes too high. I also want to read the Alter NIH/FDA paper, I just hope it’s not going to be an altered NIH/FDA paper.
Cheers Mac

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Non-foe January 28, 2013 at 11:08 pm

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

Reply

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