Cooperative Diagnostics PCR Test Poll For an ACTIVE Infection

[Cort]

This Poll looks at XMRV PCR tests by the Cooperative Diagnostics Lab. This lab has not been validated by the WPI but three things argue for its inclusion; (a) reports from the Forums suggest it is legitimate (b) it appears to be the only test people from the UK and overseas can get and (c) people are getting the CD test done - thus it behooves us to chart its results.

The PCR tests for an ACTIVE infection; ie the virus has moved out of the cells into the bloodstream and is looking for more cells to infect.

One thing everyone's interested in is whether illness level will effect ones potential for testing positive; ie will severely ill patients be more likely to test positive than moderately ill patients? To get a grasp on that the poll will assess illness level relative to disability on four levels; severely ill, moderate to severe and mild to moderate and mild. Disability levels aren't perfect but they're a start.

These polls are completely private; neither I nor anyone else can determine how anyone voted.

We're going to use Dr. Bell's disability scale. It's a bit lengthy. I highlighted the functional parts of it. This scale is from 'The Doctor's Guide to Chronic Fatigue Syndrome', by David S Bell, pages 122-123.

Dr. BELL'S CFS DISABILITY SCALE

Healthy

• 100 = No symptoms at rest. No symptoms with exercise; normal overall activity level; able to work full-time without difficulty.

MILD

• 90 = No symptoms at rest; mild symptoms with activity; normal overall activity level; able to work full-time without difficulty.
  
• 80 = Mild symptoms at rest, symptoms worsened by exertion; minimal activity restriction noted for activities requiring exertion only; able to work full-time with difficulty in jobs requiring exertion.

MILD TO MODERATE

• 70 = Mild symptoms at rest; some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work full-time with difficulty.
  
• 60 = Mild to moderate symptoms at rest; daily activity limitation clearly noted. Overall functioning 70%-90%. Unable to work full-time in jobs requiring physical labor, but able to work full-time in light activities if hours flexible.

MODERATE TO SEVERE

• 50 = Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
  
• 40 = Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.
  
• 30 = Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.

SEVERE

• 20 = Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 30%-50% of expected. Unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
  
• 10 = Severe symptoms at rest; bedridden the majority of the time. No travel outside ofthe house. Marked cognitive symptoms preventing
  concentration.
  
• 0 = Severe symptoms on a continuous basis; bedridden constantly; unable to care for self.

__________________

 

[cold_taste_of_tears]

Thank you very much for making this poll, most appreciated.
Lets hope some of us can add to it, I currently only check my email 332 times a day, which is an improvement over 331.

However, I now check the aboutmecfs forums 3,331 times a day.

 

[camas]

I'm one of the two negatives showing in the poll

My doctor is loathe to do any testing and wouldn't sign off the VIP Dx/WIP test, so I went this route hoping that a positive result might be helpful in my widow's SSDI case. In the meantime my SSDI was approved, on the first application no less.

Down the road, when we know a little more and have a standardized test that also checks for antibodies, I believe he'll allow me to get retested. Either that or I'll find a new doctor.

I was somewhat hesitant to add my results not wanting to discourage others hoping for a positive test, but I decided that, in the interest of science, it might helpful to compare the results coming from the two labs. I only wish I could have the VIP Dx test to truly compare results.

Edited to Add: I meet both the Fukuda and Canadian criteria, but after two decades rarely feel viral anymore. My functional level is generally equivalent to that of my 80-something relatives. Maybe worse. As we all know, it's not due to deconditioning because I'll suddenly have days or even a whole month where I can walk as far as a mile, drive myself to my doctor's appointments, etc. At the moment I'm in a relapse from a cold and it's all I can do to make it up and down my basement stairs to do laundry.

 

[fresh_eyes]

Thanks for letting us know, camas. That's great that your SSDI got approved.

 

[camas]

Thanks for letting us know, camas. That's great that your SSDI got approved.

Thanks, fresh eyes. It was a both a surprise and great relief to be approved so quickly.

 

[Esther12]

I was somewhat hesitant to add my results not wanting to discourage others hoping for a positive test, but I decided that, in the interest of science, it might helpful to compare the results coming from the two labs. I only wish I could have the VIP Dx test to truly compare results.

Thanks for going ahead. These polls could be really misleading if people decided to self-censor. I guess they're likely to be pretty unrepresentative anyway...

 

[camas]

Thanks for going ahead. These polls could be really misleading if people decided to self-censor. I guess they're likely to be pretty unrepresentative anyway...

You're welcome, Esther12. Perhaps I should have said 'in the interest of discussion' rather than science, since we are a rather small self-selected group.

 

[dmarie4301]

Test results...still waiting

Im waiting to get my test results any day from Cooperative. They are taking their sweet time, I must say. I see a second person got a result, so at least I guess I'll hear from them. But it's negative, like the first one. If I have XMRV Id like to know now, so I dont have to scrape up $650 for VIP too.

If all test results through Cooperative are negative, then their testing may not be good at all.

Donna

 

[fresh_eyes]

I noticed it says on their site, "We have run over 400 samples without any false positives, giving us a specificity of 100%" - and I thought, how can they know there are no false positives, unless there are no positives??

 

[cfs since 1998]

I noticed it says on their site, "We have run over 400 samples without any false positives, giving us a specificity of 100%" - and I thought, how can they know there are no false positives, unless there are no positives??

I was thinking the same thing.

 

[camas]

My results came via snail mail

Donna,

I see that you are also in Portland, and I believe I read that you sent yours off the same day I did mine. So I would assume that you would be hearing from them very soon. It is so hard waiting for these results.

 

[garcia]

I noticed it says on their site, "We have run over 400 samples without any false positives, giving us a specificity of 100%" - and I thought, how can they know there are no false positives, unless there are no positives??

Its easy to have a test with zero false positives. E.g. you send me your blood and I tell you I couldn't see any XMRV with my eyes therefore you are negative. That is a test with a zero rate of false positives (since everyone tests negative). Of course it is also a totally useless test.

The important thing with tests is the combined false positive and false negative rate. We want *both* to be low. If no one tests positive on this test then it is useless.

 

[kurt]

If all test results through Cooperative are negative, then their testing may not be good at all.
Donna

That is one possibility. But the opposite is also possible, VIP could be having false results as well.

I noticed it says on their site, "We have run over 400 samples without any false positives, giving us a specificity of 100%" - and I thought, how can they know there are no false positives, unless there are no positives??

I believe that was a mix of 400 known positives and negatives. They used known prostate cancer positives and known negative controls to develop their test. So that statement means their test identified XMRV 100% of the time in the positive controls, and found no XMRV 100% of the time in the negative controls. 100% is a very powerful specificity, I have looked at other tests. This looks like a very good test, which one would expect from a lab that knows retroviral testing well and specializes in exactly this type of test development.

Cooperative seems to use some technical language and I realize that may not always be clear. This is a test development company that works with clinical labs, researchers and doctors, not usually the public.

Its easy to have a test with zero false positives. E.g. you send me your blood and I tell you I couldn't see any XMRV with my eyes therefore you are negative. That is a test with a zero rate of false positives (since everyone tests negative). Of course it is also a totally useless test.

The important thing with tests is the combined false positive and false negative rate. We want *both* to be low. If no one tests positive on this test then it is useless.

Actually there is false positive risk in the standard type of PCR test WPI and VIP use, and false negative risk with the real-time PCR type most of the replication studies will probably use. Any test that produces a false result is useless, but I do not believe you can deduce at this point that such is the case for Cooperative, or WPI or anyone. Not enough data yet. Having different labs using different testing processes is critical at this juncture of XMRV research. If only one narrow type of test can detect a virus that is found in blood and even the saliva of 98% of the CFS population as Mikovitz says, that would be suspicious and might indicate false positive results. Multiple types of tests should be run and most should find this virus if it is there.

 

[_Kim_]

I believe that was a mix of 400 known positives and negatives. They used known prostate cancer positives and known negative controls to develop their test.

Did they use blood or epithelium from the prostate cancer samples? Since the German study found no XMRV in their samples, this in itself is exciting news.

 

[kurt]

Did they use blood or epithelium from the prostate cancer samples? Since the German study found no XMRV in their samples, this in itself is exciting news.

Sorry I do not know the details. I only talk on the phone with my contact occasionally and of course they can not tell me everything and I do not always understand everything they say either. But from what they have said I believe they used prostate cell lines already known to be XMRV positive. They then created an identical XMRV dilution to the WPI study claims. And their tests hit 100% of the time on those samples. So if there is XMRV at the level WPI claims, the CD test finds it always. So not really exciting, except that their test was so well validated.

They are also interested in screening prostate cancer clinical samples for XMRV and I know they are pursuing a project in that direction, that is a different cohort than CFS of course. CD is not focused just on CFS, they actually specialize in testing for difficult third world diseases, they seem to go after the most difficult testing problems. They told me XMRV was relatively easy compared to some other bad bugs.

 

[dmarie4301]

Another negative with Coop

I know a friend who is not on this board, who got a negative result from Coop. My result stilll hasnt come in, and shouldve by now, so I must hound these people now. If they lost my test, which, goodness sakes they shouldnt have, it went overnight Fedex, I want a refund.

 

[fresh_eyes]

Thanks for keeping us posted, dmarie.

 

[dmarie4301]

Another negative with Coop

Finally, Cooperative sent me my results through email, cuz they didnt put my apartment number on my snail mail address, they just received it back today.

So, I am negative too. I wanted to be positive. But I still believe I have SOMETHING thats making me feel like crap.

So, I guess I will wait til summer, hopefully have more money, and VIP will have better testing too.

Disappointed in rainy Portland, Oregon

Donna

 

[fresh_eyes]

Sorry to hear about your disappointment, Donna. Thanks for posting. FWIW, we have yet to hear of a single positive form CD, so maybe you can take your results with a grain of salt.

 

[camas]

Thanks for letting us know, Donna. I'm sorry to hear that you came up negative too. Would have been nice to have a quick definitive answer.