Just got the NEWS, Devastated

[ABCFS12]

Just found out I am XMRV positive by serology at VIP. I am devastated and hopeless. Like no chance of the life I hoped for now? Does this mean my dreams of a family and a life are shattered? Is this a death sentence. What about the ones who are chemically sensitive and cannot take AIDS drugs. I really had hoped it was negative. I was told that when this disease goes on for a long time and the viruses get into organs and brain tissue its pretty hopeless. Need help. Need strength.

 

[Daffodil]

ABC.....on the contrary..this could be good news. you can now be treated and might be spared the agony that many of us have gone through for decades.

i know it isnt the best possible outcome because it cannot be cured at present but please try to look a the positive side. this is not HIV..it is very different!

i think that once treatment is found, you will be able to have kids. and to be honest, i dont think it will take more than 10 - 15 yrs to find a cure. maybe 20 at most.

sue
xoxo

 

[kday]

XMRV may have nothing to do with CFS.

And AIDS drugs do not work for CFS. If they worked, people would get better. I haven't seen that. I know people recover, functionally recover, or go into remission with or without specific drugs/therapies, so not all hope is lost.

In my opinion, it's probably best to file away and not worry about your XMRV results until more is known.

 

[Jemal]

Just found out I am XMRV positive by serology at VIP. I am devastated and hopeless. Like no chance of the life I hoped for now? Does this mean my dreams of a family and a life are shattered? Is this a death sentence. What about the ones who are chemically sensitive and cannot take AIDS drugs. I really had hoped it was negative. I was told that when this disease goes on for a long time and the viruses get into organs and brain tissue its pretty hopeless. Need help. Need strength.

As you may know, there's still quite a lot of controversy surrounding XMRV still. Nothing is certain yet. Many argue this virus does not exist or is all contamination. And if it exists and infects us, it's still unclear what role it plays in our disease. It could still be a relatively passive virus. So don't be so sad and don't despair. I agree with kday that we shouldn't worry too much right now, until more is known.

Worst case scenario:
This virus is real and it causes our disease. Like Daffodil I see a lot of hope in this scenario. It opens up the possibility of treatments and I am sure people (at least doctors, family, friends, etc) will be more respectful to us. It makes a huge difference if you tell people you have Chronic Fatigue Syndrome ("yeah I am tired sometimes as well!") or you have been infected with a retrovirus. This is not a death sentence, like in the early HIV years. ME/CFS is horrible, but it's certainly not as deadly as AIDS. And if people with HIV can have healthy babies, I am sure the future will bring that for us as well.

 

[insearchof]

Hi ABCF

I agree with Daffodil - XMRV is a slow replicating virus.

There are herbal based substances being used by people like Dr Cheney and Professor KDM - artesunate in conjunction with anti virals like nexovir (been on the market a long time and regarded as relatively low risk). I believe they were selected in part because of a recognition of the toxicity of drugs associated with HIV. I am uncertain about the potential side effects of these substances in relation to an unborn child. But, women with HIV I believe have children. Maybe they come off the drugs during their pregnancy. Assuming you might have to do that when and if you ever have to contemplate such - then as XMRV is a slow lazy replicating virus, its not going to be of a concern in the way having HIV and coming off those drugs might be.

Also from what I have read there has been a lot of investigation of in relation to potential treatments in the last 12 months, so this is very hopeful.

I am not sure who told you that when it gets into the brain and tissues its pretty hopeless. I have not seen any science to support this yet either. Way too early to even be considering such IMO.

I also think that because there has been so much general research regarding retroviruses thanks to HIV, XMRV will benefit. We saw this in terms of how they FDA NCI (I think) were able to move so quickly to start general research into XMRV. They transfered existing knowledge and resources. I think we will see the same thing occuring to speed up appropriate treatments and because XMRV is slow replicating, researchers should be able to jump on it and pin it down more successfully than a fast replicating virus like HIV.

Chin up and hugs

 

[ABCFS12]

Thank you so much. Crying at the responses. But if it isn't linked to CFS and it exists it means I have CFS and now a retrovirus too? Also do a lot of people have it on this forum? I get the feeling not a lot of people do?

 

[Jemal]

But if it isn't linked to CFS and it exists it means I have CFS and now a retrovirus too?

Theoretically you could have both, I guess, but it doesn't really matter at the moment, as we don't know the implications. XMRV could still all be contamination. XMRV could be a passive virus. XMRV could cause CFS. XMRV could cause all kinds of stuff, but not CFS. There's many options and I haven't listed all of them. The scientific world is leaning towards contamination at the moment.

Also do a lot of people have it on this forum? I get the feeling not a lot of people do?

There's quite a few people on this forum and other forums that are XMRV+. This was to be expected of course as the laboratories testing for the virus are mostly related to organisations that have found the virus in high percentages of ME/CFS patients in studies. There's only a handful of laboratories that can test for this virus, worldwide!

I think XMRV is real and might cause our disease, but I have to say again that the scientific world is leaning towards contamination at the moment. It could mean this virus does not exist or does not have the potential to cause harm in our bodies.

I don't think you should worry too much about your XMRV status right now, not as long as there's so much controversy. It would be so sad if you worry for weeks, months or even years, and XMRV turns out to be nothing but contamination.

 

[WillowJ]

Right, I would say not to worry. The test may be meaningful, and if so they will find a way to manage it just like they do with HIV.

Or it may turn out that this is not the right test for XMRV, or it may be a different pathogen (virus, bacteria, etc.) which is causing your disease (the pathogen might be the same or different between patients). Of course, it could be the right test. We just don't know yet.

Before Singh's study came out, I was pretty sure of XMRV, but now I am not quite so sure. There will be more studies, and we will know more with time.

We do know some of the AIDS medicines work against XMRV, in test tubes anyway, so we know what ones to use in clinical trails if/when the time comes. There will doubtless be new ones also, designed for ME/CFS, if XMRV or another retrovirus is implicated in the disease.

ME/CFS is a serious disease, but it is hardly ever fast-progressing. Get as much symptomatic help as you can (pain, sleep) and test for and then treat treat for any pathologies you can (leaky gut, orthostatic intolerance or neurally mediated hypotension, tachycardia, various infections [some controversy exists over treating these], etc.).

So hang in there... and if you need something productive to do, write your government officials and tell them how badly we need serious funding (and a new toolkit and disease page at CDC, based only on our actual disease with PEM, cognitive dysfunction, and low NK cell function... not mixed up with other fatiguing illnesses; they need help but separated into their own diseases).

We need to know about XMRV, one way or the other, and we need to study the other pathologies we know about, and find additional answers.

 

[Nielk]

I am sorry for your sad feelings about this finding.
I didn't find out yet about myself and have thought about how I would react either way.
At this point, like all the others pointed out to you, there is so little that we know about XMRV and the little that we do know keeps getting beat up by each study that has been coming out. It could be at the end that it's really nothing so no need to worry. We have to have the patience to wait this out and see what outcome will eventually make sense.
I know that it must be a shock to you right now but the best advice others gave you is to take the best care of yourself now and wait till we have more solid evidence about XMRV.

 

[Daffodil]

ABC....if XMRV is not the cause, then your VIP test results wouldnt mean anything. it wouldnt mean you have an additional virus on top of the CFS one.

also there is a lot on the horizon to watch for, including CMX157, a tenofovir formation that will probably get into the brain in good concentrations, and Cytheris' IL-7 drug that will boost the immune system. There is talk of this IL-7 drug potentially leading to a cure for HIV, too. There is also Prostratin...human trials begin soon for HIV.

 

[currer]

Please dont worry, ABC, about the results of this test. Given the way the science is going at the moment this test could be meaningless.
In other words XMRV may not really exist, and this test is responding unpredictably to something in the testing process, not to something that comes from your blood - so with this test a perfectly healthy person with no virus in them could test positive. That does not mean they are ill, does it?

At the moment we do not know whether this test has any meaning. So do not worry about your result.
Most people with ME recover to some extent without taking drugs. Your body can heal itself if you look after yourself and get enough good - quality rest, mental and physical. The cause, prognosis and risks associated with a diagnosis of ME/CFS are all unknown. Most people, however, get better to some extent and do not deteriorate. If you look after yourself you can expect to improve.

Make sure your diagnosis of ME/CFS is a correct one. Do not ignore a new symptom that does not fit with an ME/CFS pattern. Many illnesses start with fatigue. ME/CFS is a bit of a wastebasket diagnosis as there is no diagnostic test for it ( the XMRV test does not qualify as a diagnistic test), so you may not even have ME/CFS.
I hope the excitement generated by the research around XMRV will lead to more help for people in your position by leading to proper research into this illness so that someone like you can get proper information on what this illness is and what a diagnosis of it means.

Join your local ME/CFS organisation. Research this disease for yourself. XMRV is an hypothesis at the moment, someone who is recently diagnosed needs basic information on self management and simple treatments that have been used for decades, not experimental stuff. So get in touch with an ME/CFS charity and find out the basics.

 

[caledonia]

I am confused about your lack of understanding about XMRV and CFS in general. I would suggest doing a lot more research before trying treatments. It's easy to make yourself worse instead of better. Of course, you should be working with your doctor on whatever you try. Don't just try stuff because some people are talking about it on a forum.

Testing for XMRV is way cutting edge stuff. XMRV has not been proven to cause CFS. If you're XMRV+, there is no proven treatment. Taking AIDS drugs for XMRV is very experimental.

There are many much safer, more conservative things that you can try for CFS, which may be somewhat helpful or even greatly helpful - and cheaper I might add.

Personally, I think it's better to leave the cutting edge experimental things to those who have either tried everything else with no relief, or to those who have the finances to try such experiments.

Things are not hopeless. It's possible to have a good life with CFS (although it may not be exactly like the one you planned for). Most people are thrown some curves in life anyway...it's how you deal with it that matters.

 

[markmc20001]

Just found out I am XMRV positive by serology at VIP. I am devastated and hopeless. Like no chance of the life I hoped for now? Does this mean my dreams of a family and a life are shattered? Is this a death sentence. What about the ones who are chemically sensitive and cannot take AIDS drugs. I really had hoped it was negative. I was told that when this disease goes on for a long time and the viruses get into organs and brain tissue its pretty hopeless. Need help. Need strength.

Dont' worry. At least 4%-8% of the general population have the XMRV retrovirus. You are not alone on this. We are all in it together. XMRV is not going away and science is advancing so fast, somebody around the world is likely to come up with good treatments soon enough.

 

[jen1177]

don't worry about XMRV

Sadly, the thing you should be most devastated about right now is how much money you just wasted on the XMRV test unfortunately.

After reading the two papers in Science that came out yesterday it's looking like XMRV doesn't exist outide of WPI's laboratory. They were using contaminated reagents that I guess had been used in prostate cancer studies using mice. The mouse virus DNA got mixed up with the prostate tumor DNA (or something) and created XMRV which ended up contaminating the reagents that the lab used. Then they used the same reagents in the CFS studies. (That's how I understand it.) So, it looks like there is no actual XMRV virus. You are another false positive.
I'm assuming that VIP labs use the same reagents as WPI. Your blood doesn't have XMRV, the lab's reagents did.
At least, that's how I understand it.

(Please, someone correct me if I'm wrong.)

So, it looks like everyone who got tested for XMRV got ripped off. I nearly was, as well. I was all set to mail in my test kit request form when I heard on the news that Science magazine was asking WPI to retract the 2009 paper linking CFS with XMRV.
Ugh. There went my hope of finding a cause/treatment for CFS. At least with regards to XMRV.

We all just have to hang in there.

 

[Hope123]

I don't think people should second guess the amount of money/ effort they spent in getting tested by WPI. This is where people need to understand the difference between a well-established test and one that is still being refined or developed. It was not a rip-off; a rip-off would be a case where the WPI said their test was the gold standard and promised it would be accurate. The WPI test was not FDA approved, unlike many other standardized tests. I did not get the sense that WPI ripped people off. People got too emotionally involved, didn't examine the picture/ their feelings clearly, and now want someone to blame.

 

[ankup]

From being happy and hopeful about XMRV and WPI I have passed to have bad feelings about them for this sort of things. Why are they offering the test (and spending a lot of money) when nothing is yet proven. The positive ones feel devastated... and so do the negatives... and all for no reason because it means nothing yet. What is the point of this?

 

[ukxmrv]

The point Ankup, is that we, the patients asked them to test us for the virus XMRV. As soon as there was a hint that XMRV existed and was linked to CFS, patients contacted the WPI, Redlabs and VIP dx asking for testing. Even before the Science paper was released.

Other labs (like Co-operative DX) rushed out a test that didn't even work and charged patients for this.

Nothing has changed for me since the Science paper came out. I lived through the DeFreitas / Holmes saga so I am used to this.

I'm not "devastated" by the WPI or VIP dx and the XMRV test. That's patronising. I'm "devastated" to have an incurable neurological disease that so little research money is spent on.

I'm "devastated" in the poor quality of the research by non-WPI on XMRV and retroviruses. This time we want the retroviral link researched thoroughly and with care, it's not happening.

 

[Daffodil]

well the fact remains that most people that i have heard from, on the ARV's, have improved. dr. snyderman's XMRV viral load decreased in accordance with his doing better. some people improved tremendously from taking only 1 or 2 of the ARV's (not AZT). immune parameters are better for those people, too. so, desperate patients do at least have options we did not have before....and a lot more hope, thanks to the WPI.

 

[Sushi]

From being happy and hopeful about XMRV and WPI I have passed to have bad feelings about them for this sort of things. Why are they offering the test (and spending a lot of money) when nothing is yet proven. The positive ones feel devastated... and so do the negatives... and all for no reason because it means nothing yet. What is the point of this?

Hi ankup,

I am also not "devastated." I tested positive by culture and that positive test qualified me to begin a comprehensive treatment that should have good results whether or not "XMRV" proves to be a real player or not.

I am improving with this treatment (which does have elements that "target" retroviruses) and that is what I care about.

Sushi

 

[jen1177]

That's great that people are improving with the antiviral treatment. That's the kind of stuff that gives me hope.
It doesn't necessarily mean they have XMRV, though...lots of us have other viruses like EBV, herpes 6, cytomegalovirus, etc. OR, there might be some other undiscovered virus out there that we have.