XMRV Study No. 4

[Jimk]

Third European study to show negative results

There seems to be a trend here...
http://www.alertnet.org/thenews/newsdesk/LDE61O189.htm

Hate to see all these negative results build up.

 

[Hope123]

I think they will. You don't need to know the cause of a disease or even the mechanism of action of that drug to do a trial. There are many FDA approved drugs for diseases for which the cause is unknown and fo which the mechanisms of action of the drug is also unknown. I think WPI could raise enough money to fund their own trials if they had to, but it looks like drug companies are already cooperating.

I can't elaborate that much because I was just a kid when the epidemic started, but my understanding is that it wasn't until HAART brought back people from the brink of death before the "HIV causes AIDS" theory was really fully accepted.

Yup, nothing suceeds like success. It's more dangerous to try a drug out without knowing the cause exactly but we do it all the time. And many successful drugs, we don't know exactly how they work until later.

Wake me up when someone finally does a decent replication study. This one looks like another waste of resources.

Also, this statement--attributed to van Kuppeveld et al in the editorial--is patently false:



Dr. Mikovits said in the ProHealth talk that the cohort of 101 in the Science article came from at least a dozen US states and several foreign countries.

Yes, I agree but someone needs to point this out in letters to the journal, hopefully Dr. M. and company. Problem is, WPI should have PUBLISHED their cohort results clearly somewhere by now to extinguish such rationale.

People here have likely kept up with it but don't forget the low levels of XMRV in the monkey blood despite the high levels in their organ. So, donate tissue if possible! And if you are gettng a cervical/ gut/ lymph node biopsy or surgey, ask the WPI if they want a sample and how to preserve it.

 

[usedtobeperkytina]

Well, I disagree that method doesn't make a difference. Although, I do see they thought they amplified it enough to find a low count of the virus.

But I remember DeFreitas was adamant that the exact same method had to be used for her virus to be found.

Mikovitz is now saying the same thing.

CDC didn't listen to DeFreitas. Let's hope they don't repeat the same mistake.

Honestly, if CDC comes up empty, I am afraid the CFS / XMRV connection may be dead.

I find it interesting the the editorial admits the association with prostate cancer but not CFS. I didn't read the study thoroughly since I don't know medical speak, but did this last study also include healthy controls? And if it did, did they find it at all in the healthy controls. Considering that Cleveland Clinic, WPI and Japan found the virus in some healthy controls, any study that doesn't find any virus in healthy controls must be suspect.

Tina

 

[usedtobeperkytina]

And here is a thought, I would like to see if these three European researcher groups in these negative studies can find the virus using their method in prostate cancer patients.

That would be telling.

Tina

 

[Cort]

It just seems like bad news. To me the key is sensitivity - if they can really find very low levels of the virus in their samples then the XMRV hypothesis is in big trouble - no matter how the blood was stored. I don't know if they cultured it or not - but these researchers seem to think they can find it even if they don't culture it. Are they right or wrong? We'll know when someone cultures the blood and repeats the WPI's procedures - only then will we know for sure I would think.

 

[kurt]

Well, I disagree that method doesn't make a difference. Although, I do see they thought they amplified it enough to find a low count of the virus.

But I remember DeFreitas was adamant that the exact same method had to be used for her virus to be found.

Mikovitz is now saying the same thing.

CDC didn't listen to DeFreitas. Let's hope they don't repeat the same mistake.

Honestly, if CDC comes up empty, I am afraid the CFS / XMRV connection may be dead.

I find it interesting the the editorial admits the association with prostate cancer but not CFS. I didn't read the study thoroughly since I don't know medical speak, but did this last study also include healthy controls? And if it did, did they find it at all in the healthy controls. Considering that Cleveland Clinic, WPI and Japan found the virus in some healthy controls, any study that doesn't find any virus in healthy controls must be suspect.

Tina

The CDC study is still months away from reporting, I have heard they are still running samples.

It is not true that the CDC did not listen to DeFreitas. They followed every step as she outlined, the problem was that DeFreitas could not get her test to work in a blinded situation. In fact when the CDC gave her their blinded samples to test she found more positives in the controls than in the CFS samples. The CDC gave up when it became obvious nothing they could do would find what she claimed was there. This type of science can be very, very delicate. I have heard the CDC is throwing everything they can at this problem, and I agree, if they can not find XMRV that will be pretty hard for anyone to argue with.

 

[Cort]

This gets me

to the larger number of professionals who believe that, irrespective of causation, rehabilitative treatments can reduce symptoms and disability. It is depressing that the first, untenable, view is too often confused with the second, a perspective that offers hope to patients and is backed by evidence.

Everybody has a point here. Behavioral techniques can help some people - I am evidence of that - they can reduce symptoms and disability - but they don't cure; people are not out ridings bikes and running marathons. They're probably not engaging in any intensive exercise - they're living better within the disorder that is CFS. When Wessely feels depressed about the lack of enthusiasm for his ideas he has to realize that he is partly to cause for that for equating partial benefit with cure and dragging the UK medical establishment down a tunnel with only a limited amount of cheese.

If he had stood up and said: this helps a few people alot, some people a bit and quite a few people not much (or makes them worse) - we need to explore other areas - I don't think people would be so furious.

 

[Lelvina]

This gets me



Everybody has a point here. Behavioral techniques can help some people - I am evidence of that - they can reduce symptoms and disability - but they don't cure; people are not out ridings bikes and running marathons. They're probably not engaging in any intensive exercise - they're living better within the disorder that is CFS. When Wessely feels depressed about the lack of enthusiasm for his ideas he has to realize that he is partly to cause for that for equating partial benefit with cure and dragging the UK medical establishment down a tunnel with only a limited amount of cheese.

If he had stood up and said: this helps a few people alot, some people a bit and quite a few people not much (or makes them worse) - we need to explore other areas - I don't think people would be so furious.

Thank you Cort -- I misread that part and I was _very_ confused by it. Now with your comments it makes more sense.

 

[Cort]

What Hillary Johnson did not report about Dr. Freitas in Osler's Web but which she clearly knew was that not only was Dr. DeFreitas unable to differentiate the CFS from the healthy controls in the samples the CDC gave her, she was unable to do so in a later experiment funded by the CFIDS Association with Dr. Bell's patients as well. Anybody who was put into a blinded study environment was unable to use her test to pick out the CFS patients; in fact their ability to do so is likened to throwing darts at a dartboard.

It is a brutally difficult field. Dr. Defreitas did her own blinded analysis early on but for whatever reason things just fell apart. To this day nobody knows why.

I don't know if the fact that the CDC is still running the samples is good news or not; I would think it would be good news (???) - it suggests I would think that they haven't struck out?

Dr. Mikovits in an e-mail did say that she expects several CFS and national Cancer institute studies come out shortly. She sounded positive about them - maybe things will turn around.

 

[leelaplay]

Hi Jimk

I think everyone is responding to Orla'sthread calling it study #4. More news articles are pouring out with strong negative slants. Can't bring myself to read them today.

 

[acer2000]

Let me know if this has already been answered, but why are these studies using old blood from 20 years ago? Can't they go out an find a few hundred PWC and draw their blood? I mean how hard is that?

A

 

[Lanya]

Today's Virology Blog by Vincent Racaniello has a very even-handed report up, mentions Dr. Goff's thoughts:
http://www.virology.ws/2010/02/26/xmrv-not-detected-in-dutch-chronic-fatigue-patients/

 

[gracenote]

Today's Virology Blog by Vincent Racaniello has a very even-handed report up, mentions Dr. Goff's thoughts:
http://www.virology.ws/2010/02/26/xmrv-not-detected-in-dutch-chronic-fatigue-patients/

Here is a quote from the article.

My office neighbor here at Columbia University Medical Center is Dr. Stephen Goff, an expert on retroviruses who has begun to investigate XMRV in his laboratory. He recently gave a plenary lecture on XMRV at the Conference on Retroviruses and Opportunistic Infections in San Francisco; you can hear some of his comments at medpage today. I poked my head in his office yesterday and asked him what he thought of the story so far. His answer: everyone needs to exchange samples, and they are not doing it. I couldnt agree more.

 

[leelaplay]

Good find Lanya. I love the last paragraph:

My office neighbor here at Columbia University Medical Center is Dr. Stephen Goff, an expert on retroviruses who has begun to investigate XMRV in his laboratory. He recently gave a plenary lecture on XMRV at the Conference on Retroviruses and Opportunistic Infections in San Francisco; you can hear some of his comments at medpage today. I poked my head in his office yesterday and asked him what he thought of the story so far. His answer: everyone needs to exchange samples, and they are not doing it. I couldnt agree more.

 

[leelaplay]

oops gracenote - we posted at the same time. Let's leave both posts up as it's just so darned good.

 

[Navid]

My office neighbor here at Columbia University Medical Center is Dr. Stephen Goff, an expert on retroviruses who has begun to investigate XMRV in his laboratory. He recently gave a plenary lecture on XMRV at the Conference on Retroviruses and Opportunistic Infections in San Francisco; you can hear some of his comments at medpage today. I poked my head in his office yesterday and asked him what he thought of the story so far. His answer: everyone needs to exchange samples, and they are not doing it

love this too

why the heck aren't they exchanging samples!!!!!

thanks for sharing this info

 

[Emma-Kate]

To me, and I know I sound ignorant, but this study, once again, fails to inform me of anything with regard to XMRV. The criteria, the samples, the cohort, and the fact that the PCR was only done once per sample, as far as I know. Mikovits and the crew at WPI have clearly expressed that this is a difficult task, to identify the XMRV in the specifically defined (Canadian/Fukuda criteria) cohort. Mikovits has made it known that they did four PCR test cycles on each sample to get their results. The WPI has stated their willingness to share samples, and so forth (as in their last press release). Until the scientific community begins to work together on this one, we will keep seeing these pseudo-replications, with negative results and meaningless conclusions.
After 15 years of this disease, I have to have hope in the idea of a retrovirus, until which time this hope can be either validated or invalidated by proper scientific inquiry, and collaboration within the scientific community.

 

[Gerwyn]

To me, and I know I sound ignorant, but this study, once again, fails to inform me of anything with regard to XMRV. The criteria, the samples, the cohort, and the fact that the PCR was only done once per sample, as far as I know. Mikovits and the crew at WPI have clearly expressed that this is a difficult task, to identify the XMRV in the specifically defined (Canadian/Fukuda criteria) cohort. Mikovits has made it known that they did four PCR test cycles on each sample to get their results. The WPI has stated their willingness to share samples, and so forth (as in their last press release). Until the scientific community begins to work together on this one, we will keep seeing these pseudo-replications, with negative results and meaningless conclusions.
After 15 years of this disease, I have to have hope in the idea of a retrovirus, until which time this hope can be either validated or invalidated by proper scientific inquiry, and collaboration within the scientific community.

This type of PCA cant detect xmrv and XMRV is not at a high titre in depressed patients The same old story

 

[omerbasket]

I'm worried about what those studies might do to us. I'm arfraid that they might shutter the attempts to actually replicate the WPI's study. I'm, however, still optimistic because if I'm not mistaken, Dr. Mikovits said that the WPI is working with a number of institutes around the world and those institutes probably really trying to replicate WPI's study.
I think that the last three studies shows the ugly face of the scientific world. They are not replication studies, and as I see it, if you don't try to replicate the study, which is about a new retrovirus that has no valdiated blood test yet, there's a good chance you are just trying to "prove" this study is incorrect (let's see: XMRV was found not only in the WPI's healthy controls, but also in Japanese healthy community. So if this study could actually find XMRV in every sample if it were there - How come there was not one XMRV positive blood sample from the 43 healthy controls, and actually, from the 75 blood samples altoghether, assuming that there is no reason for ME/CFS patients to be less susciptble to XMRV than the healthy population?).

Anyway, about my fears, I hope that there would be really soon results - at least partial results, from studies of people who cooperate with the WPI and really try to replicate their study. And I hope the resutls would confirm the WPI's study.

 

[lansbergen]

Samples provided by Wessely fanatics.

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