This is a story I should have told 5 months ago, but as I have put XMRV testing and ME/CFS treatment at the Himmunitas clinic behind me, I kept postponing it. My apologies. Given the 2 recent negative papers in Science (“Recombinant Origin of the Retrovirus XMRV” and “No Evidence of Murine-Like Gammaretroviruses in CFS Patients Previously Identified as XMRV-Infected“) the question of XMRV testing may seem moot, but people keep asking me for advice on whether to get tested or not and whether to go to the Himmunitas clinic to see prof. dr. De Meirleir or not. Instead of replying to those emails I might as well put the story on my blog. This article is about my XMRV tests. Maybe one day I will write about all the tests, the treatment by prof. dr. Kenny De Meirleir at the Himmunitas clinic, and the reasons (plural) why I quit, but to cut a long story short, I do not recommend prof. dr. De Meirleir or the Himmunitas clinic for treatment of ME/CFS.
I have written 2 earlier posts on whether to get tested for XMRV or not:
- To Get Tested For XMRV Or Not. That’s The Question (2010-03-02)
- To Get Tested For XMRV-MLV Or Not. That’s Still The Question (2010-09-26)
As you may have read in the second article, otherwise I recommend you do so now, I agreed to get tested (XMRV co-culture and MLV PCR) despite my lack of trust in the reliability of the available XMRV tests. I felt it was either to trust my doctor and get tested or quit treatment. As I was only 3 months into treatment, I reluctantly agreed to get tested. I had lot of tests that day, and they gave me a lot of papers to sign. What they didn’t gave me was a calculator. On the way home I did the sums and it added up to €750.
During the 3 months (!) between the tests and the next consultation, when I would receive the results, I didn’t gave it much thought. I was more interested in the other tests (immune system) than in XMRV because I had no intention whatsoever of starting the very expensive and experimental treatment based on GcMAF, Nexavir and Artesunate, estimated at between €6000 and €7000 a year, not including consultations, extra tests, antibiotics and supplements.
My consultation with prof. dr. De Meirleir at the Himmunitas clinic was on the 20th of December 2010. I told him how I felt, that I had gotten worse, actually worse than I have ever been, the negative effects of the subsequent antibiotic treatments, … He told me that more tests were needed, but that he would write me a letter with the results of the previous tests, the new tests and a new treatment plan. That was it. Consultation was over. WTF! I paid €750 for tests and he couldn’t even be bothered to discuss them, let alone give me the results. I had no intention of leaving without more information. He gave in and told me he was surprised that my XMRV and MLV test came up negative because I fit the profile, but that the serology test would … blahblahblah. I told him no more XMRV tests until science caught up with the hype.
I did manage to squeeze some information out of him about the other test-results and the new treatment plan, but he kept referring to the letter he would write. To only thing I learned about the new tests was that it involved a gastroscopy and stomach biopsy to test for some viruses and that it could only be done by one specific doctor in Vilvoorde (near Brussels).
A week later (which is very fast) I received 2 letters, one with the treatment-plan and test results and one with the appointment for the gastroscopy including a bill for the tests.
When I compared the list of tests-results with the report, I noticed that 2 tests were missing in the report, namely VDR polymorphism (FOK1 and BSM1) and methylation cycle polymorphisms (MTHFR 677C/T and 1298A/C)). I did some research on Google and on patient-forums and learned that those 2 (experimental?) tests were for an experimental treatment (GcMAF) in case I tested positive for XMRV or MLV. When I was tested in September, I was told they were tests for the next treatment, not that they were for an experimental XMRV treatment in case I tested positive. I felt scammed. I still don’t know what the results mean, but I guess it is no longer important.
Then I opened the letter with the appointment for the gastroscopy and found a list of the viruses I was to be tested for, including … *drumroll* … XMRV and MLV, via PCR.
These were the final straws, I cancelled all future appointments and quit treatment. Like I would agree to get tested by PCR one week after the contamination papers appeared in Retrovirology.
I advice against paying for a XMRV or MLV test. An XMRV test is something you want, not something you need. Save that money for a rainy day.
I do not recommend prof. dr. Kenny De Meirleir or the Himmunitas clinic for treatment of ME/CFS.
PS: If I would have written this article before the 2 negative papers appeared in Science, I would have told you there is XMRV research into ME/CFS and then there are the XMRV tests. For the XMRV research the jury is still out, but XMRV testing is a different matter. Given the many negative articles in which laboratories from all over the world failed to find the retrovirus in the blood, but did find it as contamination, what is the chance that the commercially available XMRV tests are reliable? Answer: slim to none.
Right now, the most positive thing I can say about XMRV research as cause of or contributing factor to ME/CFS is that it is on life-support.
|Doctors are men who prescribe medicines of which they know little,
to cure diseases of which they know less,
in human beings of whom they know nothing
Picture: DOS Screen – Virus Warning by carlsilver from stock.xchng [link]