XMRV Testing-FYI

[Kati]

Hi

Call me thick-headed, but I can't understand why anyone would need to be tested at this point, except to help researchers.


......

Welcome to great Britain, and very soon (thanks to the CDC) welcome to the United States as I see these doctors are being used by a certain Bill Reeves.
These people who abused me, are now the new angels of the CDC.

XMRV is going to liberate us, and save us from the angels of death.

Cold taste of tears, what a compelling, horrific,sad story. It is hard to believe that you have SURVIVED this humiliation for 20 years. Are there ME patient support groups in UK? you need to regroup and have a class action against the governemnt and doctors.

Thanks for sharing your story and I hope that this opens the eyes of policy makers, decision makers and people in general. This sounds just like it was in the days of "hysterical paralysis" (multiple sclerosis) (I wasn't there to witness that, but it sounds like nobody learnt anything from that)
I think you should be the first one in line to be tested for XMRV.

 

[MEKoan]

Nancy Klimas in today's NYTs on testing for XMRV

Q.

Is there a specific test, blood or other, to determine whether a person is infected with the XMRV virus?
Beau Brincefield
A.

Dr. Klimas responds:

The test for XMRV that has been reported is currently used only in research settings. The research director of the Whittemore Peterson Institute, which was involved in the recent findings, was quoted as saying they were developing a commercial assay that they expected to be available within weeks. Several other commercial laboratories are also developing assays.

Some important points: First, antibody tests mean you have been exposed to a virus and do not tell you actually have an active infection. Second, a technique known as P.C.R. assays measures something called viral load, and the assay is designed to measure either active replicating virus or latent (inactive) virus. Either measure would be helpful with this new virus, but we dont have access to them except in research settings.

Another way to see if you are infected is with viral cultures. The recent study published in Science used both cultures and P.C.R. assays.

 

[Min]

cold taste of tears, write your appalling story to the newspapers - ask them to publish it anonymously - the Independent might do so

 

[Jessrose21]

Hi

Call me thick-headed, but I can't understand why anyone would need to be tested at this point, except to help researchers.

I suppose if you have extra money, maybe it is out of curiosity?


Hiya, here is my reply to you very valid question.
I'm not having a go at anyone here - just trying to explain the situation of why XMRV test will be a stunning day to so many people with ME (CFIDS).....


.....Welcome to great Britain, and very soon (thanks to the CDC) welcome to the United States as I see these doctors are being used by a certain Bill Reeves.
These people who abused me, are now the new angels of the CDC.

XMRV is going to liberate us, and save us from the angels of death.

Thank you so much for taking the time, and your precious energy, to share your heartbreaking story. I just feel sick to my stomach after reading it. What a living nightmare! I pray you are able to get tested soon and get the respect you deserve from doctors.

I've always been against gov't health care and have taken the liberty of sending your story to my family and friends who believe CFS/ME is a real disease, but may be in favor of a public option.

 

[Advocate]

To Cold Taste of Tears, in reply to your Post #39 on the XMRV Testing-FYI string,

What a stunning and sad tale you have told. I am so sorry these terrible things have happened to you. Hang on. I, too, think the XMRV test might save you. (In the meantime, stay away from doctors.)

If I had seen your post sooner, I would have encouraged you to send it to our CFSAC.

 

[bluebird]

I am a pariah. Bring on the XMRV test.

XMRV is going to liberate us, and save us from the angels of death.

I pray so. I pray for vailidation, and yes, XMRV testing may even gain us access to meds and to doctors.

Though I never expect to be well, fear I shall die of this illness, I crave a bit of respect, and I want the abuse to stop. My story is a lot like cold_taste_of_tears' story. And I weep in self pity to this day when I read the stories of people who have money to buy decent health care, to access concierge/boutique medicine. I wish these patients well. I know they suffer. And I know that their experiences are good indicators for the rest of us per what helps a bit and what does not. Someone has to go first. It usually IS the monied. I just want the same treatments. I am tired of being abused. I am tired of not even being able to find any doctor at all who feels a need to do more for me than prescribe psych meds ( which I do not tolerate), or give me a psych referral.

Once, I deliberately moved in with a man with HIV who needed a roommate. I did not know him, had never met him. But... we were both desperate. This was so I could live in a town that had a physician offering cleocin IVs and other supportive meds/treatments for CFIDS. I got better on his protocol...not well, but I felt a bit better. I could get out of bed.

Then, though my doctor had accepted Medicare initially, he suddenly dumped all his Medicare clients. Dumped...out on the street. No big money= no help. Period.

It was almost impossible to find another doctor who would accept me as a patient. I am a pariah. I am tired of this status in society.

Yeah. Bring on the XMRV test.

 

[Bev]

Kati, I'm in a similar position. I've not spent much on treatments, so whatever the test costs, it feels justified. I was thinking the same price range as you. Guess we'll know soon.

I wish you much luck with your new doctor and the disability process.

~Kim

I heard the price (right now) is unknown and you have to order without knowing the cost (if you want to be tested right now)---I've heard quotes of 1000 to 2000 dollars or more. So who knows? I'm waiting.

Regarding disability process: as we know, we don't need a positive XMRV test to qualify for disability. If anything, too, this illness is a teacher of patience. Even if you have none at the beginning. NEVER EVER did I think I would have this illness this long----I thought the cause and treatment would be found years and years ago. There was no doubt in my mind.

 

[Tony]

LA Times blog

An important point from that blog: Dr. Robert Silverman of the Cleveland Clinic Lerner Research Institute, who originally discovered the virus, noted that the techniques used in Germany to look for the virus "are significantly different from the methods we use.... It is possible that the methods used may have missed detecting XMRV."

 

[Alice Band]

The Independent newspaper in the UK, said in an article on the new virus that 500 samples from London had tested and were positive.

The questions we are all asking is where were they tested, what samples were they and how?

Although the Lab in the USA has not been positive about accepting samples from London (they told me to ask them again in a few weeks) there is a similar Lab in Belgium. No ansa to my email as yet and I've not been well enough to call them.

 

[Andrew]

I was told by VIPDx yesterday: They won't be ready to run these tests until next week. They won't know the price until next week. They will be sending out only 20 to 30 sample kits a week.

I assume this can change as they go along. I'm not going to order one until I know the cost.

 

[cold_taste_of_tears]

I replied to people here privately and my messages dont' show up as sent in the outbox thingy?

I hope you guys got them, if not. Then I thank you all for such kind words and support, I really do appreciate it.

 

[Tony]

Alice, the samples were tested at the WPI by Mikovits team.

http://www.meassociation.org.uk/content/view/1033/161/

My guess is that the samples could have been supplied by Dr Jonathon Kerr. He and Dr Mikovits have recently received joint NIH research funding.

 

[firbopt1997]

Hello all. I have been watching the posts for a while and wanted to join in on this amazing topic and discovery. I have fibromyalgia & rheumatoid arthritis and I suspect CFS but have never been diagnosed. This discovery is amazing. I called VIP Dx today to get put on their list for an XMRV kit and they finally have pricing available. The woman on the phone explained that they are using and licensing the same technology as the Whittemore Peterson Institute. They have two ways they are testing for the virus. One is by PCR for active infection and that one is $400. Another is by virus culture for latent infection and that one is $500. Or you can get both the PCR and virus culture for $650.

 

[Kati]

Thank you for sharing- a bit pricy but in my opinion worth it-

 

[Martlet]

Thank you for sharing- a bit pricy but in my opinion worth it-

I'd have to save up for quite a while to afford that.

 

[Kati]

I'd have to save up for quite a while to afford that.

Maybe you could enroll in the next study they will do- keep your eyes open- then you would be tested for free.

 

[Aftermath]

Testing Fees

Hello all. I have been watching the posts for a while and wanted to join in on this amazing topic and discovery. I have fibromyalgia & rheumatoid arthritis and I suspect CFS but have never been diagnosed. This discovery is amazing. I called VIP Dx today to get put on their list for an XMRV kit and they finally have pricing available. The woman on the phone explained that they are using and licensing the same technology as the Whittemore Peterson Institute. They have two ways they are testing for the virus. One is by PCR for active infection and that one is $400. Another is by virus culture for latent infection and that one is $500. Or you can get both the PCR and virus culture for $650.

Thanks for posting this. Prices don't seem to be too out of line from what other labs are charging. Viracor charged over $1,000 for viral testing of my CSF (all negative).

Luckily, my insurance company picked up the bill. I assume that as this test gets established, insurance will start reimbursing for it as well.

 

[fairlight]

Levi-I think that's a great question..

Where are all the people who tested positive? Has anyone heard from them? I wonder what treatment they're getting.

I assume they're out there. Hopefully someone with a positive xmrv test result will share with us soon.

 

[Aftermath]

Notification

I'm not sure that they notify the patients in the trial.

Cort and I were both participants in the Georgetown proteomics study. The criteria made it clear that we wouldn't be notified if we were positive for the malformed proteins--and this study required a very painful spinal tap.

I almost refused to participate because of this. Even when it was explained to me, I don't think that the folks at Georgetown (as nice as they were) justified the withholding of this information.

Going forward, as a patient group, I think that this notification is something that we should demand after studies become unblinded.

 

[Alice Band]

One person has posted here and on the CFSFMexperimental group

http://forums.aboutmecfs.org/showthread.php?t=693