I was a little hard on WPI (Whittemore Peterson Institute for Neuro-Immune Disease) in my previous post, but I still think everything I wrote was correct. Have any of you wondered how it is possible that they have a serology test for XMRV (Xenotropic murine leukemia virus-related virus) and other MLVs (Murine Leukemia Viruses) ready days after the publication of the FDA/NIH/Harvard paper? They knew! WPI must have known, probably even before the publication was put on hold that the FDA/NIH/Harvard team was unable to find any trace of XMRV, but that they did find MLVs. This gave them the time to modify their serology test and do some extra research so they can now say that they are finding more diversity in the virus too. Not all doctors working at WPI are medical doctors, they employ some spin doctors as well. OK, I had my fun, in the end all that matters is the science.
Back to the main topic for this post.
On Tuesday 24th of August the Free University Brussels’ Press Service issued the following press release (modified Google translation):
VUB-researchers find new virus in patients with chronic fatigue syndrome
Researchers of the Free University Brussels (VUB – Vrije Universiteit Brussel) and the Belgian biotechnology company R.E.D. Laboratories have succeeded in isolating a new retrovirus in patients with chronic fatigue syndrome (CFS/ME-patients). Thus confirming recent American findings.American researchers of the University of Nevada found in October 2009 that the majority of the CFS/ME-patients are infected with the newly discovered retrovirus XMRV. These findings have been confirmed by the Harvard Medical School and the National Institute of Health (NIH).
New to the study led by Professor De Meirleir is that the virus was found in CFS/ME-patients from across Europe. Moreover, the immunological signature, a kind of footprint in the immune system, is similar to that of symptomatic HIV patients.
“It seems that for the roughly 17 million CFS/ME patients world-wide an end will come to the long ordeal surrounding the recognition of their illness. The development of targeted therapies is underway, both in Belgium and abroad”, says De Meirleir.
His new findings will be presented at a workshop at the NIH in Washington on September 7th and 8th.
What makes this press-release so important that I dedicate a entire (almost) article to it?
Professor Dr. De Meirleir, founder of the biomedical ME/CFS clinic the Himmunitas Foundation, is one of the leading experts on ME/CFS and is renowned and respected for his work world-wide. Like many doctors in Europe who do this kind of work this respect isn’t shared by national doctors organizations, health care and insurance organizations, and the official psychosocial CFS clinics in Belgium. One must only refer to the attack earlier this year on 2 Belgian doctors who provide(d) biomedical treatment for their ME/CFS patients. For more information, read the story. If you haven’t signed the petition to support these 2 doctors, now is still a good time to do it.
The result of this hostile attitude is that prof. dr. De Meirleir, and others like him, have to do a lot of their work, like treating patients, outside of the system, meaning that most tests, supplements, and medication have to be paid by the patients in full.
Most of the time when prof. dr. De Meirleir makes it to the news, it is either on his own accord or via an organization. This time the press release is issued by the Press Service of the Free University Brussels, his employer, and it mentions VUB-researchers (plural).
There is something strange going on with XMRV testing in Europe. I am a member of several Dutch ME/CFS forums. I saw messages of people wanting to take the test, having an appointment for a test, getting tested, waiting for the results … and then it stops. No results are mentioned. If you are XMRV positive you might not want to whole world to know, so I suggested an anonymous poll to the moderators, just like the one they did for the neurotoxic or H2S test, but no response. Could there be another reason for the silence? Some sources mention that 30% of the blood samples from European ME/CFS patients test positive. More recently it got mentioned that of the Norwegian ME/CFS patients only 20% tested positive. In Florida only 10% of Nancy Klimas’ patients tested positive according to an interview on Phoenix Rising. Could the strong hype on the correlation (≠ causation) between ME/CFS and XMRV prevent patients from mentioning a negative result? How to explain the differences in positive patients between the positive scientific studies and the commercial test? Was it to early to release a commercial test? There is a new serology test for XMRV and MLV available now, but this is a commercial test, not a clinical one. As dr. Harvey Alter mentions in NIH Research Matters (August 30 2010) there are currently no clinical tests available for CFS or MLV.
From my own experience as a patient of dr. De Meirleir I know that he has patients from all over Europe, so I am very eager to learn the results of his research. How many positives did he find? How does he treat the positives? How does he explain the negatives? I am looking forward to his presentation at the NIH workshop next week.
The press release mentions that in ME/CFS patients an immunological signature was found similar to that of symptomatic HIV patients. This might even be better for the recognition of ME/CFS as a physical disease and the support for a biomedical treatment than a new XMRV or MLV test.
Suppose you get tested and are positive for XMRV or MLV. You go to your doctor or to the medical adviser who decides on your disability waving that piece of paper and their reply is, “So what?” Can you blame them? Next to nothing is know on MLVs and the effect they have on human health.
HIV on the other hand, is well-known. The effect of HIV on the immune system is a scientific fact and well documented. The tests for HIV and the effects on your immune system are probably standard clinical tests.
Right now, proving that ME/CFS affects the immune system in a similar way as HIV, might be more convincing than yet another test for a mouse virus.
I am not a doctor, but that is how I read this press release. What are your thoughts on the importance of the immunological signature versus a MLV test?
| You may know the intractability of a disease by its long list of remedies. |
| Alonzo Clark |
{ 6 comments… read them below or add one }
It sounds like he must have found a lot of positives to make a statement like this: “It seems that for the roughly 17 million CFS/ME patients world-wide an end will come to the long ordeal surrounding the recognition of their illness”.
The number of positives that are known with the current VIPDX tests aren’t that promising: between 10 and 30%. It’s a very bold statement. We’ll know in a couple of days.
I’m not surprised of the low percentage of positives in Europe up till now.
- for XMRV there are 4 possible ways of testing. In Europe only the culture test is available. which doesn’t identify a “dormant” XMRV. You would have to do an additional antibody-test to look further, but that test is not available in Europe.
- in the meantime the MLV’s are also in the picture. But the tests used by RedLabs don’t look for MLV’s either. So your statement “There is a new serology test for XMRV and MLV available now, but this is a commercial test, not a clinical one” doesn’t count for Europe (yet).
I think it’s very wise to wait, how difficult that may be for us.
We need a bulletproof test that’s used worldwide before knowing if we really have got XMRV/MLV’s in whatever combination.
I myself was too impatient and a week before the Alter paper was released I had blood drawn to do the XMRV test (very well knowing that there wasn’t a “complete” testing panel for it yet). I’m wating for the results but I bet that it will turn out negative knowing what we know now …
About the immunological profile … I think that would be VERY CONVINCING for other doctors to finally accept that we are really ill … like an HIV signature … BUT … as the years of being ill go by my experience is that my illness developed, slightly changed over time, other symptoms, some less severe, others new. I also kept a good summary of all the bloodtests done in the last 10 years and also there (immunologically) things slightly seem to “move”.
So my question is: will the number of years being ill have an effect on the results of your immunological profile? I think yes.
A few things are bad every time I had it tested. So I’m eager to see what the profile will be that prof. De Meirleir will be talking of.
My gut feeling tells me it’s all too early to know those things for sure. We just found out about the MLV’s so perhaps profiles will be different depending on the MLV you’re carrying. They did speak of CFS1, CFS2, CFS3 … I think that says something about how Alter and Lo see it now: different subtypes will have different immunological profiles.
VIP Dx now mentions on its site that the PCR/culture and the serology test detect all known human MLVs. I saw mentioned that a lab in England will start using the serology test and it’s a matter of time before Red Labs will offer it too. The site of Red Labs doesn’t mention whether their culture test detects MLVs, only XMRV gets mentioned, so I assume not.
The more I read on XMRV, MLV, and ME/CFS the more I realize how little is known. It will be interesting to see the results of the NIH workshop. I hope the presentations will be made available on YouTube or Vimeo soon after.
I might be tempted to take the serology test when it becomes available, more out of curiosity. It’s also the cheapest. I hope they won’t try to sell a package (both tests) like they do on the VIP Dx site.
I’m curious about all of Dr. De Meirleir’s statements as well. I’m very anxious to hear the details of the XMRV conference in the next 2 days, and hopeful it brings more answers.
Aren’t we all, Laurel, aren’t we all.