In one of my previous posts I described my first visit to the Himmunitas Foundation and Prof. Dr. De Meirleir. I have the impression that for the first time I am going to get thoroughly tested, but it left me with one question, “Should I take the expensive XMRV test or not?” People replied with comments on my blog, in forums, in emails, and with a blog post. I have made a decision.
Arguments In Favor Of An XMRV Test
- to know for sure
- to support science
To Know for Sure
ME/CFS is a so-called invisible disease; it doesn’t show up on standard medical tests. Patients are longing for a cure, a treatment, and proof. Definitive proof to the outside world that it is a real disease and not just something between the ears. Testing positive for a retrovirus would provide that proof or so they believe. Testing positive for XMRV doesn’t mean a thing right now.
To Support Science
This is an argument that is regularly used to justify getting tested for XMRV and sending money to WPI. It sounds reasonable, but it isn’t. WPI has made their move, kudos to them for that, but right now the best support for the hypothesis of a link between XMRV and ME/CFS would be other labs finding the retrovirus in patients. At this moment scientists in several countries are looking for XMRV. Some will use the same methods as WPI and others will use different ones. The following months more results will be published. The only sensible thing we can do right now is to wait for the results.
Arguments Against An XMRV Test
- Probability of Infection
- Science Rulez
- Value for Money
- Safety in Numbers
Probability of Infection
What is the probability that I am infected with XMRV? What is known about how XMRV is transmitted? To quote the Whittemore Peterson Institute for Neuro Immune Disease:
XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air. It is not known whether XMRV is more easily transmitted than other human retroviruses.
What is known about how other retroviruses like HIV are transmitted? You can get infected with HIV by:
- sharing needles used to inject drugs with an infected person,
- having unsafe sex with infected person,
- receiving blood transfusion with infected blood,
- being born to a mother who has HIV, and
- getting breastfed by an infected person.
Assuming XMRV is transmitted in much the same way as HIV, the probability of me being infected with XMRV is rather low.
Science Rulez
What is the state of scientific research on XMRV? The most well-known study is of course “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” by WPI. Before that studies (2) had already found a link between XMRV in prostate cancer tissue. Meanwhile 6 studies failed to find XMRV in prostate cancer patients (3) and in ME/CFS patients (3). These studies took place in Germany (2), Ireland, UK (2) and the Netherlands. The 3 subsequent studies on XMRV in ME/CFS patients weren’t nearly as extensive, thorough and peer reviewed as the one done by WPI. So, the jury is still out.
In a recent interview Prof. Dr. De Meirleir mentioned that an European retrovirologist using a different method was able to detect XMRV in European ME/CFS patients. This hasn’t been published yet, but we can expect to see the results of several ongoing studies before the Summer. Good science takes time. We truly live in interesting times.
Where does that leave us patients? The best strategy is to wait and see. I do not know if ever in history a scientific article has been so much hyped as the one by WPI. Any news on XMRV goes viral on social media. I for one am not a big fan of hypes.
Below you will find some more quotes by respected ME/CFS doctors and researchers:
Dr. David Bell, November 2009:
I am reluctant to suggest to anyone that they spend big bucks for a commercial test now. We do not know if a particular test is accurate, and even if it is accurate we do not know what it means, and even if we did know what it meant we would not know what to do with it.
Dr. Nancy Klimas, November 7, 2009:
Don’t rush to get the test. Why, because you’re not going to act on that test quite yet. The knowledge of being positive is not going to get you an antiviral prescription from anyone right now because we don’t know which one to give and if it’s safe or if it’s toxic. The HIV drugs are not gentle, and you guys are really tender. If you knew your status today it really wouldn’t change anything.
Dr. Lucinda Bateman, December 2, 2009:
It’s definitely anyone’s prerogative to do what they want in terms of testing… I think it will not be long before we have local access to the lab test that will have been tested, perfected and validated and covered by insurance. The second most important thing is that we don’t know what to do with the information yet. There’s no hurry. What you don’t want to do is rush and get the wrong diagnosis and get a test that is negative when it should be positive or positive when it should be negative. While I think this is a worthy lab, we don’t know how these findings apply to people in other areas. At this point, I would save your money and wait just a little longer.
Dr. David Bell, lecture on XMRV, CFS, FM, ME, and agressive prostate cancer, presented on January 15, 2010
I think it is still a little bit early to say, “Yes, we have a test that is the right cost, the right specificity, and that the clinicians will know how to interpret”. I think we are some time off of having those criteria met.
Dr. Judy Mikovits, research director for the Whittemore Peterson Institute and co-author of the Science paper on XMRV, recommended waiting until the next generation of XMRV tests becomes available to the public when she spoke before a live and webcast audience on Jan. 22, 2010.
Value for Money
I have 19 tests scheduled for March and April. The majority, the bloodtest, a urine and stool test, are scheduled on 1 day. The weight or importance of the XMRV test is roughly 5% (1/19). Meanwhile I have received an update on the prices, and the tests will probably cost me little over €2200 (3 tests will be refunded by my healthcare provider). Not included are travel expenses, hotel, and consults. The price of the XMRV test is estimated at €390-€450 which makes it the most expensive test, amounting to 20% of the total price. Summary: the XMRV test represents 5% of the tests and 20% of the price. Given my previous arguments it is my opinion that this test doesn’t offer good value for money. There is a rumor (unconfirmed) that the test will become cheaper in a couple of months.
Safety in Numbers
I have 18 other tests scheduled besides the XMRV test. Some of these tests will look for specific bacterial and viral infections, and others will look at the state of my immune system in general. I believe it is only common sense to await the results of the other 18 tests before taking this expensive test. I have no doubt that the results of the 18 tests will provide a basis for a treatment, even if it is just a diet and supplements for my digestive problems (allergies, intolerances, …) and some advice on exercising. If any abnormalities in my immune system cannot be explained by the tests for specific bacterial and viral infections I can always opt for additional tests.
Conclusion
The jury is still out on whether there is a link, let alone a causal one, between XMRV and ME/CFS, or even human health for that matter.
Paying close to €450 for a non-approved, non-standard test for a retrovirus of which close to nothing is known and for which there is no treatment available is not my idea of a good return on investment.
Bottom line, I canceled the XMRV test.
I am aware that the arguments I used can become outdated in a matter of months. I intend on awaiting the results of the other tests before making a decision on any additional tests. If they indicate that I might have an unidentified viral infection, if the initial treatment (diet, supplements, …) doesn’t improve my health, if the findings of the original study by WPI get confirmed, and if the XMRV test becomes cheaper, I can always get tested later this year.
Resources
- BMJ – Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort
- CFIDS Association of America: Updated Information About Testing for XMRV
- CFIDS Association of America – Testing for XMRV
- David Bell – Lyndonville News, Vol.6 No. 3
- David Bell – Lecture on XMRV, CFS, FM, ME (low quality)
- David Bell – Lecture on XMRV, CFS, FM, ME (high quality part 1)
- David Bell – Lecture on XMRV, CFS, FM, ME (high quality part 2)
- Pugilator – First Visit to Himmunitas and Prof. Dr. De Meirleir
- Newly Nerfed – XMRV: Wait for the science
- Orthomoleculair Magazine – XMRV: de missing link bij ME/CVS (Dutch only)
- PLoS One – Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
- Retrovirology – Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome
- Science-Based Medicine – Chronic Fatigue Syndrome and Retroviruses: Jumping the Gun
- Virology Blog – XMRV not detected in German prostate cancer
- WPI – In The News
- WPI – Questions and Answers
- Image: Suat Eman / FreeDigitalPhotos.net
| But I hope you are not saying that CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses I would rather have HIV. |
| Dr. Marc Loveless |
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You make a lot of very good points. I think you’re right in waiting — like you say, in a matter of months everything could change. If the early results are confirmed, I’m sure a standard, widely accepted test will be forthcoming. In the meantime, take care of yourself and your immune system — which is all you could do if you had a positive XMRV test, anyway.
Thank you. What people seem to forget is that it is not just about ME/CFS anymore. It’s about ME/CFS, FM, Gulf War syndrome, prostate cancer and atypical MS. As most decision makers are still aging men the possible link with prostate cancer should concern them. The possibility that someone can get infected through a blood transfusion should also be a reason to put it high on the agenda.
Well writen article, very clearly! I agree that the XMRV test is ‘useless’ at the moment, as there isn’t yet a therapy, if one is positively tested. I strongly believe Prof. De Meirleir will give ‘experimental antiviral therapy’. Next week I’ll have my results (probably) and I will let you know what’s the outcome.
Good luck with the tests, the therapy, the diet I assume, and you’ll feel better in a few months in my opinion. I hope your ‘faeces test’ will be relatively ok, as it is known that aerobic and anaerobic overgrowth can cause a lot of problems.
Please keep me informed, thanks Johan!
Greetz, Els x
Thanks Els, keep me posted.
Excellent post. And I appreciate your conclusion as well. It’s important for us skeptics to be open to changing our minds if the science supports that. I will certainly not be getting tested for XMRV anytime soon, but I will be thrilled and happy to do so if it turns out to be helpful and necessary.
Thanks. The original study by WPI is science, but so are the other studies. Who’s right and who’s wrong? Or who’s the most accurate? Time will tell.
By “science” I mean “scientific consensus.”
In a rational world I would agree, but who decides on the consensus? A small group of scientists, scientist of all disciplines involved, the government, the public? In my own country a report has revealed that only a small minority got better with GET and CBT, a much larger group got worse and the majority remained the same. Yet an official proposal for a new approach sticks to GET and CBT as the only proven effective treatment for CFS patients (Fukuda and Oxford criteria) among others based on the good treatment in England.
I’ve been tested and my family has been tested. I did it for safety reasons . It truly is up to the patient. Now me and my family know . Now I’m taking steps to make sure I don’t infect others. It took one person to be positive for HIV to start funding research. Wake up people if your infected it means something.
Hi Elle. You have a point. When there is a chance that you might infect other people (new relationship, wanting to have children, …) and just waiting until the findings get confirmed (whenever that may be) isn’t an option getting tested is an good alternative. Better to be safe than sorry. It does you credit to care so much for other peoples health. But what the results mean is still not known.
And what, exactly, does it mean?
ga naar Ignace en laat het uittesten Johan, via bio-resonantie, ‘t kost je slechts 40 euro….
Hij heeft al een aantal keren zaken gevonden die later bevestigd werden door een bloedanalyse, maar schrijft het niet op en je moet met zijn resultaten ook niet gaan zwaaien bij conventionele dokters en medisch adviseurs. Hoe goed zijn diagnose ook is, ik heb geen baat gehad bij homeopathische middeltjes en tincturen.
Hi Johan,
I prefer to use the term “critical thinkers” instead of skeptical… just my preference.
If you consider ME/CFS a psychological based illness than sure go ahead and use the
GET/CBT techniques that would work for anyone that is ONLY “chronically fatigued” like
from depression or some other situationally induced illness. If you BELIEVE that you
have a “physical bio-medical” illness… than I would not either give credence to
papers about it written by the psychologists nor would I follow CBT/GET as those of us
that have had this for 23+ years and have been thru that routine, KNOW it ONLY makes
us WORSE… Gee..they seem to be forgetting the PEM issue.. Post Exertional Malaise.
IT’S A BIG DEAL…. so that Rules OUT a number of the papers written on this issue.
It’s ALSO one of the MAIN Criteria for Defining ME/CFS.. so ignoring it is NOT smart
and Making your Patients WORSE, is NOT following the “Do NO Harm” code.
As having lived thru the HIV outbreak in the 80’s and having had 5 close friends pass from it..
I know games and routines of this game… It is Important to KNOW if you have a Retrovirus or not.
..for also blood supply and organ transplant and the risk of the health-care workers…
Maybe some of the older readers might remember just HOW LONG it took to validate HIV
and how many health-care workers got infected by needle-sticks before they changed the
medical procedures of all medical providers. ??
Funny, how I was also working in a hospital during the HIV outbreak also.. and there have been
numerous clusters of medical professionals that also broke out with ME/CFS..one even happening
in the 1970’s here in Sacramento and a Dr., his wife, and many of his nurses all came down with it..
I even had my Closest friend that got it from her husband 8 years AFTER they were married cuz of a
one night fling he had B4 they were married… and they were NOT even testing for HIV back then…
So my 2 cents or 2 pence would be to say…. as SOON as we know there is an “For SURE” Accurate
test I would get it done…I DO believe that it is INDEED NOT a medical co-incidence that there was a ME/CFS flare DURING the SAME time as the HIV Flare… they BOTH effect the Immune System.
I personally believe there is a connection..I am NOT the Scientist to know what or how, but my gut
says this is not happenstance.
Since this post was written… the VipDX XMRV test HAS decreased from $650 to $400 now and
they are running a more extensive test (culture) that takes about 3 weeks to grow. They ARE working
with other labs around the world to make sure they are using the same reagents so they can get accurate results.
There are also more studies taking place (now in Utah) and other meds that were originally designed to help HIV are now close to being considered able to help XMRV… Key word.. “close”. Some folks ARE already taking these antivirals, BUT the ONLY ones that I KNOW that tested Positive and then later tested Negative were those that had stem cell implants.. MOST anti-retroviral meds can be nasty. But then, they have been working on them for many years now and even Dr Nancy Klimas says MOST of her HIV guys
are FINE/OK/Great whereas her ME/CFS folks are like the days of old AIDS patients = not doing so great to put it mildly.
Thank You Elle, for your Bravery and Sharing.. We also have had someone I know test Positive as part of the new Utah study and a few others I know…One IS undergoing stem cell implants. My prayers and Best wishes are with you..
Johan..the implications for XAND now and have from the beginning also included a HUGE Autism Group.
I am working on some articles for the following months that will address some of the issues you mention so I won’t do it here. You will have to wait a bit, but I will let you know when they are published.
There is no XAND, at least not yet. Even the findings of WPI haven’t been confirmed yet, quite to the contrary, but I do know the arguments against those studies. Given the possible implications of XMRV on individual’s and on public health it deserves a lot more attention than it currently receives by government, universities, scientists, bloodbanks, media, … No need to panic, but we need answers and fast. I hope the ongoing studies will provide at least some of the answers.
Hi Johan,
I am going to have my blood drawn as part of the CFIDS BioBank study. The idea is to replicate the WPI XMRV testing.
http://www.solvecfs.org/Home/tabid/97/Default.aspx
That’s great, contributing to science. Kudos.
Will you get any feedback when they analyze your blood?