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 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
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.
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
- 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.
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.|