XMRV Testing-FYI

[garcia]

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.

I spoke to Dr Kerr the other day and he said that the patients in his trial would not be notified of their XMRV status.

 

[MEKoan]

Originally Posted by Aftermath View Post
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.
________________________________________________________________________________________

Holy cow! I am so impressed that you would be willing to do that! I wasn't even willing to have a spinal tap to completely rule out MS.

Talk about taking one for the team!!!

You are my heroes!

Prostrating self,
Koan

 

[Advocate]

Hi guys! Can someone explain re: "the kits" for XMRV tsting?

...Are these "kits" to be taken to a lab for blood draws?
Or do you somehow draw your own blood - as in Diabetic testing with a finger-stick???

Thanks! jackie

Hi Jackie,

I haven't seen a kit yet, but I assume you will have to take the kit to a lab because at least one of the tubes of blood has to be centrifuged before it is mailed.

 

[jackie]

Hi Advocate! You're right - that would be the logical conclusion (I'm in short supply of logic today!)

My ignorance comes from being an HMO "sheep" for too long. My HMO leads me around (pushes, really) saying you can go here!...But not there! Do this...but not that!

Would be nice to call the shots, someday!

Thanks much (where's that centrifuge when you need one!?) jackie

 

[Cort]

So you don't need a doctor to order the test? You just need a doctor to direct you to a lab to draw the blood?

 

[Advocate]

So you don't need a doctor to order the test? You just need a doctor to direct you to a lab to draw the blood?

Hi Cort,

I called the VIP a couple of mornings ago and left a message on their answering machine, but I figured they were getting hundreds of calls and I didn't really expect them to call me back. A polite young woman called that afternoon.

When you call, if you request it, they put you on the waiting list for a test kit. They will send you one in four to five weeks. You don't need a doctor's Rx for the test kit; you don't need to pay for it ahead of time. You will pay when you return the test kit to them.

I think she said it's $600 for both tests. She said one test is a PCR for the active virus; the other is a virus culture for latent virus. But I'm not sure I got this straight! Maybe you can do better when you call. Please do better when you call! (And pass along the correct information.) She said both tests are the same as the ones they use at the WPI. I think she said the virus culture is for antibodies. (?)

The test kit will have two green-top tubes, one lavender tube and a serum separator tube. (Again, she spoke fast, and there might be more tubes than that. I'd love to know.)

The test kit will have a requisition form in it. When you get it, maybe you can avoid a trip to the doctor by mailing the form to your doctor for a signature, code, etc., (along with a stamped return addressed envelope). Your doctor will need to mail the form back to you along with a written order for a venipuncture. (Or, of course, you can go to the doctor and get everything done at once.)

Then when you are ready you can go to a lab of your choice. The blood, in at least one of the tubes, has to be centrifuged.

A prepaid FedEx Priority Overnight envelope will be included in the test kit. The $600 you send them (if you do two tests) covers the cost of the postage.

They will probably tell you to call a number and have your kit picked up, but the way I would do it is pack everything up--the blood, requisition, etc.--and head for the nearest authorized FedEx station. You can find authorized centers online. Don't drop your package into a FedEx box. You must give it to some authorized person behind a counter.

I would time the blood draw so that you can get the envelope to FedEx before their last send-off of the day. That way it will be en route in as short a time as possible and get to Reno as quickly as possible.

The results will be mailed two or three weeks later to your doctor, not to you.

The number I called was 775.351.1890.

There is a requisition form for other tests on their website. I imagine the XMRV form will be similar. Just a guess.

 

[Aftermath]

Blinding the Results for Your Insurance

There is a large sealed foil biohazard labeled package inside a bigger cardboard box. I am not going to open the biohazard package; it must have the vials in it. It looks like you will need a M.D. to order the test, which makes sense. I will email VIPdx and try to find out what the codes mean. I may hand carry the kit to the regional Fed-Ex center, but I will talk to the lab first.

I am not doing the test for validation of my reality or any kind of insurance benefit. I have nothing to prove to anybody, and I am not invested in a particular result. The M.D. I am ordering with will be able to blind the test result from my health records if need be. I already have treatments that have helped to stabilize me, and do not expect to use powerful anti-retrovirals unless and until it is a well-proven therapy. Maybe not even then. I just want the truth of my situation.

This is probably a really good idea for those who have enough funds not to attempt putting it through insurance.

My insurance actually ate $1,000.00 of HHV and EBV testing at Vircor. That being said, with the potential implications, I'm not sure that I would want an XMRV positive on my records.

 

[Kati]

This is probably a really good idea for those who have enough funds not to attempt putting it through insurance.

My insurance actually ate $1,000.00 of HHV and EBV testing at Vircor. That being said, with the potential implications, I'm not sure that I would want an XMRV positive on my records.

Why not declare it to the insurance, Aftermath? What are the potential implications that you are thinking about?

 

[Advocate]

I am not going to open the biohazard package; it must have the vials in it.

Hi Levi,

Many labs will send you a check list and tell you to examine all the contents of a kit right away to make sure that everything is included. I doubt that the contents of the biohazard bag are sterile, except for the inside of the vials, which will have caps on them.

Since you (or someone) probably will have to write your name and date on the vials before you send them, why not open the biohazard bag now and let us know how many vials there are. For people with low blood volume, this is an issue.

 

[Alice Band]

Redlabs in Belgium is looking at doing the test. They are in talks with the Reno Lab (VIP).

The chap I had an email from said that it may be a few weeks until he can confirm exactly what they can offer.

 

[Solon]

Is the Reno lab any how related to WPIs work?? As far as i remember they dont mention it somewhere.

On one hand i want towait until WPI directs us somewhere. I am pretty sure most labs in the world will provide such a test pretty soon too, but on the other i am really intrigued about getting this test done and shoving the results to my quacky professors' face.

 

[Solon]

Cold Taste of Tears ___

I completely attest to your sayings. I have been considered a psychiatric, manicdepressive person for years. Thought by doctors that i was mad for testing for all those utterly bizzare conditions as they told me, i repeatedly "annoyed" my professors for immune tests and different PCR test strains, and showed them more than a dozen different tests they never looked upon before in their lives. It was all brushed off as psychosomatic or smthing, they told me viruses like that hit and go, you cannot trace them, they told me my immunity is ok, despite the drop in CD4+ and B cells, they told me HPA axis dysfunction dont exist and so dont hypocortisolemia, they said you cannot measure catecholamines via serum/plasma (its worthless and inaccurate to them), that interleukin testing doesnt exist, and a myriad of other unbelievable things.

They sent me to psychiatrists, who sent me back to endocrinologists and finally i got to find the best person to listen to me at least since he couldnt do more (also prescribed cortisone and testosterone- but i had already taken that and a bunch of others on my own)

 

[Aftermath]

Sharing Data

I spoke to Dr Kerr the other day and he said that the patients in his trial would not be notified of their XMRV status.

Again, as a patient community, I think that going forward, we need to let researchers know that this is unacceptable.

At the end of many placebo-controlled studies, members of the control group are often allowed the genuine treatment after the study is unblinded.

I see no legitimate reason not to unblind things as per patient wishes at the end of the study.

For example, what if the malformed proteins in CSF did turn out to be a valid diagnostic test? That would mean that I would have to undergo another hellacious procedure in order to get a diagnosis.

Again, I am all for research--it's the most important thing we have. Nonetheless, the policies of not tricking any immediate benefit down to the guinea pigs is NOT acceptable.

 

[garcia]

Again, as a patient community, I think that going forward, we need to let researchers know that this is unacceptable.

At the end of many placebo-controlled studies, members of the control group are often allowed the genuine treatment after the study is unblinded.

I see no legitimate reason not to unblind things as per patient wishes at the end of the study.

For example, what if the malformed proteins in CSF did turn out to be a valid diagnostic test? That would mean that I would have to undergo another hellacious procedure in order to get a diagnosis.

Again, I am all for research--it's the most important thing we have. Nonetheless, the policies of not tricking any immediate benefit down to the guinea pigs is NOT acceptable.

That's a valid point, but really its between the patients in each study and the doctors/researchers to negotiate. Though I agree with you I can't see any reason not to unblind. My main priority right now (as a severely affected patient) is to get tested for XMRV. Unfortunately I live in the UK so have no access to any form of testing. It's extremely frustrating! Doubly frustrating when one of the guys doing the research (Dr Kerr) is only a couple of miles from me.

 

[hope]

Hi Garcia

Ive heard the Breakspeare Hospital may be offering an xmrv test in the future.

 

[Advocate]

Here is the vial list... Hope this helps.



Hi Levi,

Yes, that helps, thank you. Yesterday I stopped at our local lab to tell them we'd be getting the kit. The head of the lab googled xmrv, and was amazed that we'd be getting it, because, she said, the test just came out. She seemed happy to learn a little something about the virus.

 

[Nielk]

I stopped by Dr. Enlander's office last Thursday. They drew blood for
his study with Dr. Kerr in England for XMRV.

I was told that I will not be told as to how my results turn out.

Dr.Enlander said he can send it in for me to be tested at WPI for $650.

But, advised me to wait since there is no rush right now to find out yet
until we have more information. At this point, wed don't even know if it's a causative agent or just another pathogen.

Nielk

 

[Kati]

good comment Levi, I agree.

 

[_Kim_]

VIPdx: 6 week waiting list

I just got put on the VIPdx waiting list for XMRV testing. I was told that there will be an approximate 6 week wait until they'll send out my test kit.

 

[cold_taste_of_tears]

If XMRV causes neuro immune disease and ME CFS is a neuro immune disease - the link is 100% clear I feel. (When regarding Canadian Criteria ME CFS with obvious cardiac/immune/nervous system dysfunction).

If ME CFS was autism or something more vague (in relation to immune and neurological disease), then I'd agree there is no finite proof that XMRV is the cause. XMRV appears to be very much the cause in ME CFS though, a door that lets in other viruses we've all heard about for decades (HHV-6, CMV, EBV etc etc). They are probably the nail in coffin for ME CFS patients - literally.

The WPI lab findings in the SCIENCE article have been replicated 3x already by other labs. XMRV causes T Cells to be infected, and T Cell counts are lower in ME CFS. (Only other disease I know that does this is HIV, which is a retrovirus). XMRV just happens to be a retrovirus, one of only 4 in the world apparently. Given those facts, there is no other plausible explanation that XMRV causes a state of ME CFS - due to chronic immune dysfunctioin, and infections that (people who aren't immune suppressed) fight off in a few days.

Having said all that, if one is describing a syndrome of 'chronic fatigue' - then I agree XMRV is not the definate link. CDC's and Reeves disease CFS won't be XMRV. For these people, then for sure, it's pointless believing XMRV is the way forward and a test isn't of paramount importance.

ME is not a weak vague fatigue state however, that many doctors call CFS.
ME = XAND. CFS vague fatigue state, obviously does not involve an incurable life long retroviruses, otherwise the mentalists wouldn't improve on CBT and Exercise, which makes ME patients worse!

ME patients cannot stand upright, barely able to walk, cardiac problems etc.
All feeling infected 24/7 and worsened on activity. These people obviously have XAND, and included people wrongly labelled with the neurotic Reeves conception of 'CFS'. My dog has CFS when it walks too far, CFS is a ridiculous silly label, to make ME (Myalgic Encephalomyelitis vanish).

Thankfully, CFS (ME) will vanish overnight when XMRV means a diagnosis of XAND. Hence the importance of an XMRV test as soon as posisble.