Cooperative Diagnostics Pulls XMRV Molecular Test from Clinical Market

[MEKoan]

They seem to be as surprised as anyone else that their test didn't work out.

Nobody implied they were evil but they absolutely did something that wasn't smart. They were out of the gate with it on Oct. 26th. How smart could that have been?

 

[MEKoan]

Hi Gerwyn,

We were posting at the same time. Nice to see you.

Koan

 

[Cort]

I agree they went too quickly...hubris is a good word...you might throw greed in there as well. . Really from what we hear from professionals nobody should have been offering a test so quickly.

WPI engaged in hubris as well with their test - but I think it was provoked by CD coming out so quickly so it's more understandable so CD scores at the top for hubris and pushing the envelope and perhaps falling through it.

We actually can't make a judgement who's fallen yet. My bet would be them, for sure, but time will tell.

 

[Gerwyn]

Hi Gerwyn,

We were posting at the same time. Nice to see you.

Koan

same here

 

[cfs since 1998]

I agree they went too quickly...hubris is a good word...you might throw greed in there as well. . Really from what we hear from professionals nobody should have been offering a test so quickly.

WPI engaged in hubris as well with their test - but I think it was provoked by CD coming out so quickly so it's more understandable so CD scores at the top for hubris and pushing the envelope and perhaps falling through it.

We actually can't make a judgement who's fallen yet. My bet would be them, for sure, but time will tell.

Comparing WPI/VIP and CD as if they both made equivalent mistakes is ridiculous. The WPI test is the one that was published in Science and showed a highly significant association between CFS and XMRV+. CD test had no science behind it at all. Had CD conducted their own study and published it in Science or another journal showing they could differentiate between CFS and healthy controls with their test, or had VIPDx begun marketing their test before the publication of the Science paper, only then you could say they made comparable mistakes.

 

[bel canto]

No mercy from the wearily waiting.

 

[julius]

Comparing WPI/VIP and CD as if they both made equivalent mistakes is ridiculous. The WPI test is the one that was published in Science and showed a highly significant association between CFS and XMRV+. CD test had no science behind it at all. Had CD conducted their own study and published it in Science or another journal showing they could differentiate between CFS and healthy controls with their test, or had VIPDx begun marketing their test before the publication of the Science paper, only then you could say they made comparable mistakes.

On the other hand, WPI knew from the work they did on the study that the test was very unreliable, yet they still put it on the market. So, it was a different scenario, but not necessarily a better one.

 

[Gerwyn]

That test doesn't look so good right now but I would note that they also took lots of blood from their study participants and looked very hard for it and apparently didn't find it or not much. We'll know how much when the study comes out.

We're acting like they are idiots but none of the people in the game here- the researchers in any of the studies or the labs, etc. - are idiots. Based on the methodology in the Science paper (unactivated cells) and their confidence in their methodology they thought they should be able to find it

It wasn't until the WPI later said that the cells had to be activated and even then they had to take several passes over cells taken at different times from different patients sometimes that researchers heard how hard it was to find the virus.

CD demonstrated that they could find XMRV in very low levels in samples but they didn't apparently find much of it (or any?) in CFS. For me, why is still a mystery.

Hi Cort

This was the statement made by CD at the time of the launch of their XMRV test.

In a statement announcing the release of its XMRV assay last fall, Cooperative Diagnostics said the virus was "identified in 95 percent" of all patients with CFS, and in "large numbers" of patients with fibromyalgia and atypical multiple sclerosis.

"When we learned that XMRV might have such a high association with chronic fatigue syndrome, we immediately became interested in developing a test," CEO Brent Satterfield said in the statement. "Now, [anyone] who has suffered from the condition can take testing for XMRV into their own hands."

Now with fairy stories like that they are either members of The HANS CHRISTIAN ANDERSON school of virology plain liars or total idiots !

 

[Francelle]

Perhaps another slant on Co-op Diagnostics pulling this test from the commercial market could be the realisation that in the light of other information at hand (which WE know not of yet), lots of possible ‘false negatives’ coming from their lab may not be a good outcome for the USA’s blood supply either!

 

[garcia]

I'm sorry but I just really disagree with statements that professionals who make their living in a field are idiots in their chosen field.

On that basis no doctor is an idiot simply because they get paid for what they do. You might want to try asking your readership if they agree with you (based on personal experience with e.g. doctors). I strongly suspect they don't. My experience is that idiocy abounds in healthcare.

They seem to be as surprised as anyone else that their test didn't work out.

Actually none of us were in the least surprised that this "test" didn't work. The fact they were trying to cash in on someone else's hard work sent alarm bells ringing. Plus the sending in drops of blood for what is a new and therefore difficult to find pathogen was never going to be a good move. The zero positive rate only confirmed that the test was flawed. Finally Dr Coffin slammed this test at CFSAC.

 

[Cort]

Doctors may or may not be geniuses but I would venture to suspect that most doctors who can get through college, medical school and then through their lengthy internships are inherently pretty smart people - whether they have good ideas are bad ideas about CFS. They reflect the general knowledge in the field. CFS is a controversial disease in the medical world and doctors actions simply reflect this. We all know that doctors simply don't have the time to work their way through the niceties of many diseases.

I don't think that any professionals in any intellectually challenging field - and this is certainly one of them - are idiots. When they engage in actions that we don't like or have opinions we don't like it's always comforting to label them as 'idiots' - but they're surely not idiots or even close to it. They may be ignorant of the facts - or stubborn in their opinions - but they are not idiots.

Plus the sending in drops of blood for what is a new and therefore difficult to find pathogen was never going to be a good move. -Garcia

As I noted earlier there was no indication that I could see in the Science paper that XMRV is any more difficult to find than any other virus - that came later. If you look at CD's list you can see that they make their living creating tests to diagnose some very deadly viruses. I assume they know what they're doing.

XMRV was young but not new. XMRV was a known virus and all these labs had samples of it. They were all able to drop XMRV in varying strengths into blood samples and then test for them. Once the WPI said they had found 'XMRV' in the blood of CFS patients CD should've been able to devise a test for XMRV using their own samples, just as they had done for hepatitis C, HIV, etc. That is what all these labs have been doing. WPI's results suggested that their XMRV was very close to the standard XMRV. This didn't look like a difficult problem at all in the beginning. They already knew what XMRV looked like; it had already been sequenced. This wasn't discovering a new virus - it was finding and already more or less quantified virus. After all that's how WPI found it. They matched its genetic sequences to the genetic sequences of an already known virus! This wasn't rocket science!

Its unfortunate that some statements have been made suggesting that, as Dr. Raccaniello put it "the rest of the world doesn't know how to do PCR". Those kinds of things having inflamed patients - including me - and obviously riled up the research community (check out the Pharmaceutical articles as well). I've basically decided that Dr. Raccaniello is correct; these people do know how to do PCR - something else is going on here.

Why they and others have had so much trouble finding it is still unclear. With this new big federal study on its way we should have a solid answer to XMRV fairly soon it sounds like.

Suggesting that they or doctors or any particular researcher is an idiot does injustice to the complexity of XMRV and CFS. As one expert noted "everybody's doing everything right and they're still getting different results"

 

[Cort]

Hi Cort

This was the statement made by CD at the time of the launch of their XMRV test.

In a statement announcing the release of its XMRV assay last fall, Cooperative Diagnostics said the virus was "identified in 95 percent" of all patients with CFS, and in "large numbers" of patients with fibromyalgia and atypical multiple sclerosis.

"When we learned that XMRV might have such a high association with chronic fatigue syndrome, we immediately became interested in developing a test," CEO Brent Satterfield said in the statement. "Now, [anyone] who has suffered from the condition can take testing for XMRV into their own hands."

Now with fairy stories like that they are either members of The HANS CHRISTIAN ANDERSON school of virology plain liars or total idiots !

Yes, but Gerwyn that fairy tale came from the WPI! They were the only ones that said they found XMRV in 95% of CFS patients.

 

[parvofighter]

Idiots abound in every profession - after all, they're human

Cort, with all due respect, you're putting those docs on an illogically high pedestal! What gives?

I don't think that any professionals in any intellectually challenging field - and this is certainly one of them - are idiots.

Cort, c'mon. Idiots are in every profession. After all, every profession is populated with humans! It takes far more than academic intellect to be a good doctor. I'd recommend a jaunt into the area of Emotional Intelligence. Things like humility, and the understanding that doctors don't know everything is one of them. Recognition that science - if anything - is just in its infancy - (especially in medicine!) is another. Intuition that a patient with a remarkably consistent history (eg. malaise after activity), who has so much going for them, MAY just be telling the truth, is another. The truly good doctors know that - and openly acknowledge that they have more to learn. They are not "quick on the draw" when it comes to pointing the finger at the supposedly malingering patient. They are genuinely curious about what's going on - and that takes a vulnerability of spirit and the kind of character and emotional intelligence which not every doctor has. What are we to call the immunologists and infectious diseased docs who have outright refused to see many of us - despite our classical histories with opportunistic infections - other than idiots?

We all know that doctors simply don't have the time to work their way through the niceties of many diseases.

Recognizing that doctors only have finite energy, there are some however who stand above the crowd. These are the ones who are willing to say, "I don't know what you have... but I'm willing to learn". These are the ones who are prepared to stand up for their scientific convictions - like Dr Peterson, who were ridiculed for their belief in ME/CFS for decades, not years.

The idiots are the unfortunate many who completely cop-out scientifically, blame their ignorance on the patient, and say, "It's your fault. Snap out of it. Get some exercise. See a psychiatrist"

If you look at CD's list you can see that they make their living creating tests to diagnose some very deadly viruses. I assume they know what they're doing.

C'mon Cort, you said this when you defended Dr Vernon for not investigating the BMJ study. After all, she's a professional, right? This kind of starry-eyed adulation of professionals is just plain nonsensical! If there is ANYTHING the ME/CFS world should have learned, it's to QUESTION and challenge the science! That's not being insolent or rude. It's being scientifically independent - and thoughtful.

Its unfortunate that some statements have been made suggesting that, as Dr. Raccaniello put it "the rest of the world doesn't know how to do PCR".

No, it's not unfortunate. It's necessary. I'd remind you that Goff said that too, stating that all that was required was one base pair error in PCR primers, to miss a PCR diagnosis:

"there might be PCR primers that people are using that dont work for some strains of virus. One base pair is all you need in the primer to cause you to miss that."
​

This forum is full of enquiring minds. Respectfully disagreeing and/or intelligently debating valid issues - whether with professionals or with highly informed laypeople - will only win you respect. Bowing down to "professionals" automatically, as you have repeatedly suggested - not so much.

Suggesting that no doctor or any particular researcher is infallible does injustice to the complexity of XMRV and CFS.

 

[Stuart]

Yes, but Gerwyn that fairy tale came from the WPI! They were the only ones that said they found XMRV in 95% of CFS patients.

So no one is an idiot who has a degree?

How about Dr. Poul Thorsen?

Oh, but you can accuse them of telling "fairy tales?" :Sign Good one:

 

[justinreilly]

Doctors may or may not be geniuses but I would venture to suspect that most doctors who can get through college, medical school and then through their lengthy internships are inherently pretty smart people - whether they have good ideas are bad ideas about CFS. They reflect the general knowledge in the field. CFS is a controversial disease in the medical world and doctors actions simply reflect this. We all know that doctors simply don't have the time to work their way through the niceties of many diseases.

I don't think that any professionals in any intellectually challenging field - and this is certainly one of them - are idiots. When they engage in actions that we don't like or have opinions we don't like it's always comforting to label them as 'idiots' - but they're surely not idiots or even close to it. They may be ignorant of the facts - or stubborn in their opinions - but they are not idiots.

Cort,

I agree that the percentage of true idiots (quite low intelligence and knowledge) is pretty much non-existent in medicine. I think what people mean is that doctors often make unintelligent decisions when dealing with us.

More precisely, I'd say the vast majority are ignorant or misinformed about this disease and many are arrogant- a very bad combination in professionals who have authority over what care and support we are given.

As one of my good health care practitioners says:

"A doctor's ignorance we can forgive because it's not always their fault and we can teach them; but a doctor who is ignorant and arrogant will cause a lot of sickness in his patients and that is much harder to forgive."

 

[MEKoan]

Cort,

It was in one of your posts where "idiots" was first mentioned. You wrote that we were acting like they were idiots. Then the conversation veered off into whether or not a person could get a doctor of medicine if they were an idiot (a good memory goes a long, long way in med. school - just saying) and/or if they could be a bench scientist and be an idiot and, and, and...

Do we really have enough energy to reflexively take up arms against each other over these silly issues. Ok, maybe it's not such a silly issue that there may be "idiots" at the helm, but that's not what's really being discussed. I am growing so wearing of defending the camp. (Yes, I am mixing metaphors - the camp is on a ship, ok!) People did things that, in the fullness of time, were discovered to be mistakes. They were mistaken!

All the defending in the world is not going to make the Coop test, which looked pretty dicey to many of us at the time, look like a good idea now that it has failed to find anything and has been withdrawn.

I, too, have a fondness for the underdog but sometimes the underdog has fleas and you gotta give that dog a bath before you can let it back in the house.

 

[oerganix]

My personal experience with "idiot" as doctor: I went to high school with a guy who became a doctor. Having been through four years of school with him, I would never go to him for diagnosis or treatment. I always got better grades than he, in every subject, but especially the sciences. He often tried to cheat off me on exams. He plagiarized on take home exams and got his much smarter girlfriend, now his wife, to do a lot of his homework.

How did he get to be a doctor? His parents had lots of money and the ambition to have a doctor in the family. They made a huge donation to the medical school in the same envelope as his application! They paid for tutors for him during medical school and he had to repeat a year because he still failed organic chemistry.

I know not every doctor has this history, but I suspect that many of them are less intelligent than average and/or have poorer ethics and less compassion than average. Plus, even those who are bright, ethical and compassionate can make mistakes.

So, sorry, but just getting the impressive letters after your name does not guarantee respect from me. After all, Wessely, Sharpe, White, Reeves, Jones, et al, all have those same impressive credentials and look what they've contributed to our lives!

Having been married to a dentist who worked at an Army hospital whose personnel we socialized with a lot, I have observed dozens of "qualified" medical personnel who didn't have all their oars in the water.

 

[Esther12]

His parents had lots of money and the ambition to have a doctor in the family.

The stupid kids from rich families seem to go into medicine here too: - a respectable career without much accountability, once you've been guided through your exams it's hard to be fired for just not being terrible good. Ideal.

 

[Rrrr]

does anyone know if cooperative diagnostics is doing anything more with xmrv? someone mentioned to me that they are working with the cdc or nih, but i have no idea if that is true. kurt, do you know?

 

[omerbasket]

I think that when we think about it today, we understand how rediculous was Cooperative Diagnostics's test for XMRV - when they tried to test it by one drop of blood.
I hope they are not working with the CDC or the NIH, since if they are trying to find it with that method we are guarenteed that almost all of the samples would come out negative, and many of them would be false negtives.