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Adrienne Dellwo

XMRV Lab Tests: Should Chronic Fatigue Syndrome Patients Get Tested?

By November 3, 2009

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The XMRV Discovery Series

It certainly doesn't take long for things to come out of the woodwork on the heels of reported scientific breakthroughs. Already, some labs are offering very expensive tests for XMRV, the retrovirus researchers have preliminarily tied to chronic fatigue syndrome and possibly fibromyalgia. Now a lot of people are asking, "Should I get tested?"

The doctors and researchers who've spoken out about these tests say, don't waste your money. Even if you get a positive test, we don't yet know what to do about it. One commenter here recently said she wanted to be tested, because if she was negative for XMRV she'd know to keep looking other directions. That's a perfectly valid argument -- except that, for this particular retrovirus, there IS no reliable commercial test. Even the researchers behind the XMRV finding are looking for XMRV infection in 4 different ways, and getting different numbers depending on the method. A negative test result from a commercial lab, right now, is meaningless.

I know it's hard to hear that, when you've waited a long time for validation of your illness, and you want to find effective treatments now; but that's the reality of it. Do you want to spend $400-$500 dollars for a meaningless test result that doesn't guide you toward better treatments? Odds are, you can find a better use for that money.

Waiting, when your life is in shambles because of illness, is excruciating. I understand that. I'm not a patient person, and I hate having to tell you to wait around and be patient, but that's what we have to do. Quality science can't take shortcuts, so we just have to wait for it validate (or invalidate) this research, provide a reliable test, and figure out what treatments work. How much more of your life will pass while you wait? Hopefully not that much. Researchers are already working on a test and eying possible treatments.

Will you pay for an XMRV test anyway, just to see what it shows? Do you think this is just one more money-making scheme targeting desperate people? Share your opinions below!

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Comments
November 3, 2009 at 4:17 pm
(1) MyFibroHelp says:

Unfortunately too many times with the desparate, there are people chomping at the bit to take advantage of them instead of truly trying to help them. If there was a definitive conclusion to the test, aside from positive or negative for XMRV, and a clear path for help, coming out with a test would be great. For now though, labs should offer the test at no charge and do research with the results so more questions can be answered. When labs begin to charge for the test, there needs to be an end in sight for what they are testing for.

In the meantime, fibromyaliga sufferers, please work on lifestyle changes while you are waiting for answerers. For some sufferers, just changing the right things the right ways may take care of your symptoms and then you won’t need to worry about any tests!

November 3, 2009 at 5:53 pm
(2) Omer says:

the people that are behind the laboratory in Reno which is now proposing the test are the people that are behind the XMRV study in the WPI institute – Because, as I understand it, Dr. Vincent Lombardi, which is the manager of the laboratory that offers the test, is a scientist that works in the WPI institute. Moreover, Annette Wittemore spoke about this test in thw following article:
http://www.rgj.com/article/20091103/NEWS/911030349/1321/news

However, perhaps people should make more than one test (while every test should be of a different kind), at least if they are found negative for XMRV.

November 3, 2009 at 6:14 pm
(3) MyFibroHelp says:

Individuals may also need to be tested more than once to rule out false positives and false negatives. There will also be individuals infected with XMRV and not showing any symptoms yet. Others will be symptomatic, but since these symptoms are very similar to other conditions, may still test negative. It may take a while for the testing to get sorted out.

November 3, 2009 at 9:25 pm
(4) Franklin says:

I don’t live in the US, so can’t take the test associated with Lombardi. If I did, I would.

Adrienne, there is no way that this is meaningless…unless the original research is crap also. If you think about this for a while, you’ll agree.

If you want to offer wise counsel, and people do need thoughtful folks to offer insight……why not provide a guide for dealing with the test results. The reality is that people are going to take the test. And they need assistance after the fact. Those results raise more questions than they answer, but the fact that some of the those question can even be asked is real progress.

November 3, 2009 at 11:08 pm
(5) Brett Zamir says:

I have to agree with Franklin on this one. Hurray for the researchers who have put their time into developing it. As long as the test has some use (e.g., rare or no false positives if not false negatives), hats off to the researchers who are doing something. I thought I read somewhere (can’t find it now) that the proceeds were going back into the institute; even if not, everybody has to make a living (ideally moving on to remedies of course).

Anyways, I think there is something to be said for getting a confirmation of having the illness, even if a confirmation of not having it would prompt a different course of action. Knowing one has the virus could help 1) Affirm to one’s own self even more that it is indeed “real”; 2) Have something to affirm to others who question its legitimacy; 3) Motivate one to take extra precaution against transmitting it to others. 4) Motivate one to take steps to lower cancer risks if the virus indeed increases the risk.

Whether that is worth it is I think a question for each person to ask themselves. I’d personally at least wait until further confirmation by other studies.

November 4, 2009 at 12:16 am
(6) Pained says:

Well if it isn’t meaningless, it is 99 per cent useless. There are existing tests for virtually everything that has similar symptoms. And a even a re-verified positive still leaves doctors with no route to do anything.

There are other tests, currently meaningless as well for treatment purposes, such as Substance P in the spinal fluid (majority of people with fibro have elevated levels), or a functional MRI or brains scans, all useful for research but not for the individual patient.

I’m as eager as anyone (my case is severe) but right now it’s really not much more than grasping at straws. There are always people out there offering a shred of hope — for a price. When there are accurate, meaningful tests they will be relatively available, not just from one or two places, because millions of us will want to know.

Thank you, Adrienne, for your consistently thoughtful and measured remarks.

November 4, 2009 at 1:17 am
(7) Kurt says:

In a free market companies may do what they wish as long as they do not break the law. IF you want to get tested, get tested. There is no reason to wait, a positive now is the same as a positive later. Also, more people getting tested will provide more data for researchers.

November 4, 2009 at 12:05 pm
(8) Jennifer Rice says:

I agree with this article. If a negative result isn’t accurate and you can’t do anything about a positive it makes sense to wait til it is covered by insurance and action can be done about it.

November 4, 2009 at 9:33 pm
(9) sandy says:

What is the point to waste money on tests which would never be allowed by any of my doctors? They do not care about the test outcomes but just how to control the symptoms which in itself is enough to handle, time consuming, frustrating, etc.

November 6, 2009 at 4:30 pm
(10) Nancy Henson says:

I’ve been listening/watching the CFSAC meeting that was held last week. We are urged NOT to take those tests. Even the WPI researchers aren’t prepared to provide what it would take for a group of doctors to do any testing. Wait until we get the word from the respected doctors and researchers.

November 6, 2009 at 4:47 pm
(11) Kate says:

Dr. Coffin in the CFSAC meeting urged that we not buy the test being offered by http://www.codiagnostics.com. He said nothing about the test being offered by http://www.vipdx.com which is associated with the WPI. I’m on the waiting list for their XAND2 test. It’s expensive but a part of proceeds from the test will go to the WPI and further research. I think it’s up to the individual and their doctor to decide if they want this testing. To me it makes as much, or maybe more, sense than testing for EBV HHV6, etc.

November 6, 2009 at 5:58 pm
(12) cheryl says:

Thank you for your comments, I feel the same way. Until there is a standardized test with clear outcomes, I am not spending my money no matter how desperate I am for answers. Many of us are broke from what we spend out of pocket anyway, so why add to that? If this much has happened in the last three weeks since the story first broke, we have to believe good things are going to happen quickly.

November 7, 2009 at 12:11 am
(13) Mic says:

Adrienne said, “I’m not a patient person, and I hate having to tell you to wait around and be patient, but that’s what we have to do.” I believe that a lesson in living that this (these) disease(s) may offer is a lesson in patience. My mother’s last words to me were, “Don’t feel guilty if you can’t do everything you feel you need to do…recognize your limitations, girl!, you do have them.” Limitations, patience, pacing….maybe I’ll get it right some day. ;~)

November 9, 2009 at 12:02 am
(14) Keith says:

I see no point in paying 400-500 dollars for a test right now. I already know I am ill and will not give blood. I’d rather wait for the folks at WPI to offer a test and let them have the money to do more research. With no treatment available based on a positive the test means litte to me. My doctor as well as most doctors have no idea what XMRV is and will have nothing to offe us yet.

November 9, 2009 at 11:56 am
(15) Katy says:

Almost none of the tests I have taken, some of which cost hundreds of dollars, were of any use to me. My blood tests show a chronic virus and that’s enough for me right now, though if the rotavirus test were cheaper I’d get it. The only tests so far that have led to helpful treatment were Lyme, babesiosis, thyroid, cortisol, leaky gut syndrome (intestinal permeability), and the CDSA (stool test) that helped me get the right probiotics. I don’t need to test positive for rotavirus to know that my symptoms are real, I don’t even see how that can be a question.

November 17, 2009 at 6:54 pm
(16) augoldminer says:

This is just another worthless test will bring out another group of quacks claiming they can cure CFS and fibro.

Yes its vary likely that a virus is involved in “some cases” of cfs and possibly fibro. But until a medically recognized treatment is found the quacks will have a field day scamming people with these disorders.

You can see this in all the quacks that claim Lyme disease causes fibro.
Many websites for fibro are infested with people that claim they were cured of there fibro after being treated for lyme disease. (Never could understand why they were still there if they had been cured except to annoy the rest of us.)
Plus fibro is found around the world in the same % of populations even where Lyme disease is not endemic.

I know what caused my fibro and its Sarcoidosis a autoimmune disorder.

I do believe there is a “possible” viral cause to “some cases” of CFS and Fibro due to the fact.
because there have been out breaks in hospitals and they have higher numbers among EMTs then there should be.

November 22, 2009 at 3:50 pm
(17) `trish burns says:

I don’t need a test to prove i am sick. however people in the medical field seem to need me to have a test to prove i am sick. if a test gives me relief from being treated like i am a drug seeking hypochondriac i am all for it! just being able to say i told u so would feel so good. there are a lot of people in the medical community (especially nurses) who owe me an apology for their nasty attitude!

November 24, 2009 at 9:21 pm
(18) Martlet says:

I can’t afford it or I would be tested, not because it would make me well again, but because every test done through VIP Dx helps fund further research at the WPI and, I think, also adds to their data. I was actually about to ask my kids to buy me the test for Christmas but unfortunately they have already bought our gifts. I never, ever thought I’d want a blood test for Christmas!!!

December 8, 2009 at 2:43 pm
(19) Lisa Schicht says:

I recieved my test results for VIP and am one of four patients of Dr. Cheney testing negative…they are still developing an IGG antibody test…I suggest people wait awhile until there are more consistent results, and that insurance covers it…

Lisa

December 9, 2009 at 4:06 pm
(20) cb says:

I have a question for all the patients out there who are also in relationships or have kids/pregnant. Do we now have to also worry about passing along a virus? Would a neg/pos result change your habits or worry you some more ? In my case, I have lived with fibro for 20+ years and possibly CFS, I would like to know if this could possibly effect my family members.

December 11, 2009 at 6:49 pm
(21) janet Kirkland says:

I tested postive for the pcr-infectious and culture-latent
test for xmrv. I have had fibromyalgia for 12 years. The research has to start somewhere. VIP lab did the blood test. My doc signed off on it. Cost 650.00

March 22, 2010 at 11:09 am
(22) Toni says:

Who are you guys to says that, “this won’t help me, I already know that I’m ill” and that “this test us useless”. You’ve totally misunderstood this. XMRV is a retrovirus similar to HIV wich for we have numbers of effective drugs.

We don’t know how stubborn this virus is before we have tried to eradicate it. And we should try that asap.

June 29, 2010 at 12:44 pm
(23) Bek says:

What do you mean they can’t do anything if you test positive??? Of course the dr. can, it is called anti virals!!

June 30, 2010 at 4:30 am
(24) mystrylady says:

Generally ,It is a known factor that people in pain would do anything to get rid of it ,Hence the possibility of exploitation in my opinion cannot be ruled out.

November 12, 2010 at 3:34 pm
(25) howard says:

I have had chronic fatigue for 28 years now. I have had it long enough and have done enough research to know that there is omething very peculiar about this illness. If XMRV is the cause, how did we all get a “mouse” disease? I believe that this virus was a contaminant in a vaccine that I received in the past. Subsequent vaccines can trigger the virus into an active or more virulent form according to the discoverers of XMRV. That is exactly what has happened to me. It just so happens that the vaccine that made me feel worse was made by GlaxoSmithKline. And, many of the medications that have been recommended to me for treatment of symptoms are also made by GSK. Coincidence? I am not so sure anymore. Mercury preservatives also seem to play a role, as they create an environment for these viruses to replicate and thrive as well. Considering the fact that 13 million dollars was ilegally diverted from the study of Chronic Fatigue really makes me suspicious that anyone really wanted to find a cure, as Big Pharma is getting stincking rich from drugs to treat symptoms and not the cure. After 3 decades, this is the only conclusion that I can draw.

December 18, 2010 at 5:08 am
(26) Missy says:

If a virus is the root cause, why wouldn’t males be affected as often as females? The ratio is anywhere from 6:1 to 9:1 depending on which research article you read.

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