• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The real story about XMRV coming out today?

VillageLife

Senior Member
Messages
674
Location
United Kingdom
I saw this on facebook.....
(thanks to Lilly Meehan)

The big news that is lost in all the press about the BWG is that Silverman admitted that his lab had likely contaminated his part of the Lombardi study - which were the full sequences that he identified as XMRV and prompted the authors to use the term XMRV in the first place. Yet the rest of the Lombardi paper stands, as do findings by other labs of MLV-related viruses (MRVs) in CFS patients. The huge significance of this is that all this time researchers were looking for the wrong virus, when in reality patients from the Lombardi study had something similar but still distinct from XMRV. This helps explain both the negative studies and, likely, the BWG Phase III results. What we need the research community to do now is focus on sequencing isolates from patient blood all over again, to find out what virus or viruses many of us REALLY have.
 

VillageLife

Senior Member
Messages
674
Location
United Kingdom
This is huge news, we need to get in contact with the blood working group and let them no we need urgent research into this as the blood supply is still not safe. I think its great Dr Silverman has explained the truth and now we have to act quickly and get sequencing the isolates of these viruses, we need lots and lots of funding.
I actually read some where that the red cross are thinking about reviewing if they should let people with me/cfs donate blood again, this is terrible and we need to let them no this new information.
 

Daffodil

Senior Member
Messages
5,873
i thought the BWG also checked for the other MLV-related viruses as well and couldnt find them either?
 
Messages
13,774
If the WPI's testing was able to distinguish between samples from patients and healthy controls, we should have got some hint of this from the BWG. If not, then that undermines the key reason why their Science paper was exciting. We still have Lipkin's study coming up to test the WPI's methods once more, but the BWG results still seem to undermine one of the WPI's key claims, and their reason for selling blood tests to the public.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
VillageLife is correct. Silverman's VP62 variation (found in prostate cancer patients) called XMRV, was so named by him, not WPI. It was not found by WPI. In fact all the BWG had done is proven that VP62 is contamination. XMRV or MLV-related virus variations which WPI and Lo found/finding are not detectable by the assays used by the BWG. I repeat, the BWG only looked for one variation which never existed. The BWG assays could not pick up any other variations, which is really what all the negative studies were about. ME/CFS patients still have a retrovirus - a gammavirus which is a wild type virus, not contamination.

Silverman's acknowledgement of this problem was probably realised some time ago (probably the only people who didn't know about it were the WPI), and I suspect it has been used in a well orchestrated attempt to put a lid on MLVs. Those who want XMRV to go away, may have succeeded politically at the moment, but XMRV variations are still out there.

Do not hold out any hope for the Lipman study. At best it will find a myriad of co-infections and after spending $10 million we will be no further ahead. Co-infections have been studied for decades with no clear outcome. Studies into co-infections are a delaying tactic. Do not lose hope in the WPI. They do not have the support of the govt, so need our support even more.

Presumably WPI were detecting MLVs rather than XMRV in their non-retracted findings, yet they struggled to find these in their own patients samples (when blinded in this study) while detecting them in some negative controls. It doens't look good.

Oceanblue, WPI did not use its assays, but was forced to use the BWG assay which supposedly could detect only VP62. Most probably most of the WPI patients submitted to the BWG did not have VP62 (if it actually is a HGRV). Certainly we know that the other positives provided by Peterson would show up negative to the VP62 assay also, because they already have in the Levy/Peterson study. All very clever. But you can't tell me that everything is above board. Many know what is going on.

I am reluctant to say it but if you want to get a good analysis on this you will need to go to mecfsforums. Their analysis is spot on. You will also see there that Ecoclimber/JoshuaLevy gets a bit of pasting.

Edit: I have had to backtrack on some of this - WPI may have been the only one not to use VP62. However WPI did not fully validate the negative controls.
 

oceanblue

Guest
Messages
1,383
Location
UK
Oceanblue, WPI did not use its assays, but was forced to use the BWG assay which supposedly could detect only VP62. Most probably most of the WPI patients submitted to the BWG did not have VP62 (if it actually is a HGRV). Certainly we know that the other positives provided by Peterson would show up negative to the VP62 assay also, because they already have in the Levy/Peterson study. All very clever. But you can't tell me that everything is above board. Many know what is going on..
If they assays only detected vp62 that would change things, but according to the paper, all labs used their own chosen assays and the assays were designed to detect MLVs as well as XMRV. And even with a vp62-only assay, I don't understand why wpi would find controls positive when others did not.
 
Messages
13,774
Oceanblue, WPI did not use its assays, but was forced to use the BWG assay which supposedly could detect only VP62. Most probably most of the WPI patients submitted to the BWG did not have VP62 (if it actually is a HGRV). Certainly we know that the other positives provided by Peterson would show up negative to the VP62 assay also, because they already have in the Levy/Peterson study. All very clever. But you can't tell me that everything is above board. Many know what is going on.

I am reluctant to say it but if you want to get a good analysis on this you will need to go to mecfsforums. Their analysis is spot on. You will also see there that Ecoclimber/JoshuaLevy gets a bit of pasting.

This doesn't sound right.

How come the WPI have said that they accept the results of the paper, and that there is currently no reliable assay for testing the blood supply?

By their lights, the new studyconducted by the Blood XMRV Scientific Research Working Group sponsored by the U.S. National Heart, Lung and Blood Institutedoes not rule out the possibility that mouse retroviruses infect people with CFS. The conclusion of the Blood Working Group was that we don't have a reproducible assay to detect XMRVs in the bloodnot that they weren't in the patients at all, Mikovits says. Ruscetti adds that the working group analyzed their original patients but used samples taken a few years later.

Are you saying that the WPI do have a test that could be used to distinguish between blood samples from CFS and controls, but that they weren't allowed to us it? And the WPI have not complained about this publicly?
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Esher, I think you are right. WPI may have used its own assays, but the negative controls were not validated and the primer used by other groups was probably VP62. Getting my info from mecfsforums. Hard to take it all in. Sorry about mixup.

Explanation for positives in negative controls may be because they actually were positive, but not detected by VP62: http://www.mecfsforums.com/index.php/topic,9580.msg112847.html#msg112847
 
Messages
13,774
Thanks for trying to explain what you think Rusty. I know it's complicated, and a lot to take in.

It's always possible that the controls were positive for XMRV, and this was not detected by VP62 testing... but the samples from CFS patients still should have been positive dramatically more often. Also - the two labs finding positives are menat to have claimed that different control samples were positive.

There's always a danger that bizarre coincidences could take place, and the control samples used just happened to come from healthy people with lots of XMRV infections, but that doesn't alter the fact that these results are about as bad as they could have been for the WPI and the theory that XMRV/HMRVs are related to CFS. We've got Lipkin coming, which is a much larger study, making these twists of fate even less likely, so the WPI will get another chance, but I've not seen anyone point out any real problems with the BWG study, other than its relatively small size.
 

markmc20001

Guest
Messages
877
I am reluctant to say it but if you want to get a good analysis on this you will need to go to mecfsforums. Their analysis is spot on. You will also see there that Ecoclimber/JoshuaLevy gets a bit of pasting.

That's the conclusion I have come to also.

I know there are a few here that are very good at the science, but it is an extremely mixed bag.
 

currer

Senior Member
Messages
1,409
Hi KFG

I have gone to MECFS forums because I got tired of the lack of science on PR.
This was hard because I am very fond of some people here.

I support the WPI without reservation. They are the only group which recognises the true extent of this disease with the moral courage to try to help us. They are good people. It would reflect badly on me if I did not support them.

I believe there is retroviral involvement in ME and that the WPIs work is correct.
Check out jamies latest blog and look at Dr Snydermans results.

This is the sort of work that needs doing. Testing assays at such an early stage in the discovery of a new agent is unfair on the emerging science.

I come from a family where all the ME related sickness is in one generation, myself and all my siblings.
Our parents are quite healthy. There is clearly a transmissible agent involved in this disease and I cannot reiterate again how stale all the standard theories on ME are.

It is moral cowardice not to support the WPI at this stage.
They have taken a great risk to help us and they deserve our support.

I know that most people on PR want to believe in the WPI.

Those who can interpret the science for them have gone to MECFS forums
So check that forum out for information.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think it would be helpful for people to read very thoroughly what has been written, both in the papers and in the "False Positive" article in Science.

No-one has been able to reliably reproduce their results under blinded conditions. It just plain hasn't stacked up when subject to proper scrutiny.

Anyone suggesting anything other than that the specific findings of the 2009 paper have been comprehensively refuted - now also by its own authors - is living on another planet. It is ignoring the vast majority of the scientific evidence produced since October 2009. You are welcome to do that, of course. But if you chuck scientific method out the window, then say "hello" to fraudsters, pseudoscientists, Psychologisers and all the other snake-oil salesmen who have made it so difficult to get any serious data on this illness for many years.

There's lots of other research going on. No-one should be too despondent - I mean, I was never exactly enthusiastic about having a lifelong retrovirus anyway, to put it mildly. The WPI are continuing their work and I hope they embrace collaboration with some of the people they've encountered. It would be great if some of the really good scientists stay involved in this, despite Simon Wessely's blatant attempts to scare people off.

This is science. Love it or hate it. I can assure everyone out there it's the only way we will ever get our lives back.

I have to admit that the XMRV research is looking sloppy, muddled and confused, at best, right now.

Indeed it seems to be definite that the original XMRV isolates were contaminants.

But this does not mean that Judy's viral research has been a waste of time.

She has been investigating other retroviruses, not just XMRV.

And she has been detecting something in ME patients, so we need to find out what that is, even if it is only contamination.

Maybe it's all contamination, but maybe not. I'm not sure what to think right now. I want to hear what the WPI has to say before I come to any conclusions.

Also, Judy's antibody results are interesting and might lead to some further discoveries.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
What i don't agree with, KFG, is that the WPI have said the original Lombardi et al. (or at least parts of it) and also their UK study has been done under blinded conditions. Also, as far as i know, the Hanson study was blinded and should be presented these days. That's what is difficult to understand. Things don't add up yet. So i'm curious to hear from Maureen Hanson and potentially other groups now. But it's not looking good and it takes blinded results one can trust for me to still give XMRV a chance.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
What i don't agree with, KFG, is that the WPI have said the original Lombardi et al. (or at least parts of it) and also their UK study has been done under blinded conditions. Also, as far as i know, the Hanson study was blinded and should be presented these days. That's what is difficult to understand. Things don't add up yet. So i'm curious to hear from Maureen Hanson and potentially other groups now. But it's not looking good and it takes blinded results one can trust for me to still give XMRV a chance.

Yes, I have been thinking the same thing.

I don't think we can come to any definite conclusions just yet... We need to wait until we hear the other results announced, and what the WPI has to say about it all.

It might be that the other studies have detected different HGRV's... And maybe that's why there has been a delay in announcing the results for these studies that we are expecting.

Judy has said that she has been looking for other retroviruses (or varients of XMRV), so maybe we will hear an announcement about this, this weekend.


BTW, when does Judy make her presentation?
 

currer

Senior Member
Messages
1,409
I hope most people on PR are also sophisticated enough to recognise the variety of unfair techniques that have been used to silence the WPI and prevent their research from being published.

As sufferers from a disease where political concerns interfere to a great extent in our right to treatment, I should also hope that people on PR realise that the dominant scientific consensus is being upheld by vested interests which would like nothing better than to close down this area of research.

If ME is reinvented as an autoimmune disease and is treated as such, which I think may come soon, new sufferers will still be generated because the underlying cause is neglected.

Do we want to enter an era where it is taboo to look into the cause of disease?
This is why the theory that we have no infectious agent is touted about.

Believe that if you like.
 
Messages
13,774
I know that most people on PR want to believe in the WPI.

Those who can interpret the science for them have gone to MECFS forums
So check that forum out for information.

I think we should all try to avoid being guided by what we want to believe.

If the WPI are finding similar rates of positive from CFS patients are controls when under blinded conditions, then we don't need much interpretation of that result - it speaks for itself.

It's easy to go along with someone confidently telling you what you want to hear if they dress it up in sciencey language and a few buzz-words, but I've not yet seen any good reason as to why the WPI would not be able to distinguish between control and patient samples under the BWG trial just published.
 

Daffodil

Senior Member
Messages
5,873
FROM DR. MIKOVITS:


body


Sue
There are XMRVs different strains, we know that now and have already found them..now we know why we have struggled because the sequence of the virus was incorrect..now we can sequence all the strains and find the right drugs for each one...there is more hope today than yesterday..not less..