Over the weekend some new information on ME/CFS regarding finding a cause and a diagnostic test has been announced and I was more than happy to post what I found about the research. If you haven’t heard yet, you can read all of the details from Dr. de Meirleir’s research on my post Breaking News: ME/CFS Cause & Diagnostic Test Discovered According to Researchers.
As I reported in the above linked post, the Neurotoxic Metabolite Test is a self-testing urine kit that will show whether there are too high levels of H2S (Hydrogen Sulfide) in your body/urine. According to Dr. de Meirleir’s research, he says that high levels of H2S may be the main cause of ME/CFS.
If Dr. de Meirleir’s research turns out to be correct and is backed up by further studies, finally having an actual test to diagnose ME/CFS is something that most of us patients have been waiting for for a long time. I will probably order the test and take it just to see what results I get and to provide further information to post on this website. While this is exciting news and something we have been wanting for a long time, I still tend to have my guard up somewhat and don’t want to get my hopes up.
The test will sell for around 15€, plus shipping charges. For ordering, or to get more information, please contact Protea Biopharma at info@proteabiopharma.com or go directly to the website page for the Neurotoxic Metabolite Test on Protea Biopharma.
What are your thoughts on the Neurotoxic Metabolite Test for ME/CFS? Do you think it’s too early to get excited about this news or do you think researchers have finally found the “real” cause and have found a reliable, accurate test? Please share in the comments!
perpetualspiral says
Hey Sandy, call me a cynic but I think this ‘test’ is a bunch of baloney. I don’t need to discover some stuff in my pee to know I have CFS. Dr. de Meirleir held a press conference instead of publishing his findings in a respected peer-reviewed journal. His credibility is in question: http://bit.ly/186g0p. In addition, correlation does not imply causation. Even if everyone with ME does have this substance show up in their urine, it is a fallacy to assume it is the ’cause’ of the disease.
Hege Renate says
I have ordered the test, but only because I want to see the result for my self.
I am not convinced and I belive it needs much more testing. But maybe in the future it can be used along side other tests.
Sandy Robinson says
I agree with you. I will probably order it for the same reason.
Wayne says
Even if this hypothesis is true, it is not the cause of me/cfs, it is only a byproduct. His past is very shady anyway to consider this legitimate.
Sandy Robinson says
I don’t have confirmation that this guy is “shady” but I think I remember reading something about his past history that was questionable but whether it’s true or not – who knows. I will keep up on all of the news and try to post whatever I find on this information – both pros and cons.
Michaël says
Dear all,
solution!! buy yourself three tests (or two) and test it on yourself and someone who’s healthy, than you have the answer about the test!
When you’re test is positive, there is a antibiotic you have to take for a year, wich one? to be continued.
Greats,
from the Netherland
Paul says
I have read a couple of comments here about Dr. de Meirleir being ‘shady’ – no details though and one post probably copied the other. Please post details about his background if you know any as we all need to be aware… otherwise stop throwing baseless accusations around in case you convince someone you know what you are talking about.
We need to hear back from people who take the test (I will order one) and see if:
a) all suffers get a positive result
b) all healthy people get a negative result (if you are willing to pay for a healthy person to take the test).
Kind Regards,
Paul.
Sandy Robinson says
Paul – no need to get defensive. Commenters are allowed to post their own opinions and hopefully we will discover if this test is going to prove valuable. Thanks for stopping by.
N Perry says
No credit/debit card so I can’t buy the test until it is in my pharmacy…but what if your CFS is caused/made worse by chronic exposure to hydrogen sulphide as a result of eg poor drainage/poor housing….my housing is rented & several days/week for hours at a time I am exposed to the rotten egg smell from the drains. It permeates the water seals when other flats flush.
Vicky says
I did buy the test and I tested positive on it and I was never more happy. Sad I know, but when you’ve been from doctor to doctor and they try and say it’s all in your head it’s nice to be able to show them they’re wrong. To have doctors out there fighting for us and trying to find out why is so nice. It was easy to order and it didn’t take long to get.
bridget says
i also tested postive which backs up my thoughts on gut dysbiosis. but what do i do about it?
E. F. Ramos, M.D. says
Hello folks,
I’ve been studying ME/CFS for 11 years and I’m finishing a clinical research with already 148 patients, all tested with a miniaturized version of De Meirleir test. Some among you are right, this test doesn’t detect THE CAUSE, but rather a POWERFUL PATHOPHYSIOLOGICAL MECHANISM involved in ME/CFS.
However I’ve developed a unique treatment that leads to a NEGATIVE test in previously REAGENT patients, with impressive clinical improvements in most of them. Very important, I have tested and treated 16 DOCTORS and NURSES with the disease but their skepticism faded with the successful targeted therapy.
I’m not hunting patients, I do not intend to keep diagnosing and treating ME/CFS; and I’m not involved with business related to ME/CFS.
In fact De Meirleir just sent me the tests for evaluation; and he doesn’t even know my results. I just intend to discover how to cure the disease. Meanwhile I can only affirm the test is a good diagnostic tool, especially useful for those not acquainted with ME/CFS clinical coherence, something that takes some time to achieve.
Soon I’ll publish my results.
Keep your eyes opened.
;o)
Kathleen Rice says
E F Ramos MD….Did You ever publish your findings?