The real story about XMRV coming out today?

[Bob]

I do disagree on the responsibility of the patient community because their actions played right into the hands of the psych community. Unlike HIV and Aids, this illness came with the label of a psycho-somatic disorder from the get go so we were fighting an uphill battle from the very beginning to dissuade that false belief within the scientific community. So some responsibility belong to us that we behaved in a manner and conducted ourselves in such a way that it wouldn't enforce those beliefs.

I don't know exactly what's gone on between you and the patient community on the other forum ecoclimber, so I might be ignorant of some of the issues.
But to paint a disease as being psychological in origin, based on the behaviour of a few individuals who are highly vocal in their dissent, does seem totally inappropriate, and far fetched.
I don't always like the behaviour of all patients advocates either, just as I don't always like the behaviour of all scientists and researchers. Sometimes I don't like the behaviour of my friends and family either.
In a perfect world, we would all be perfectly respectful towards each other and there would be harmony between patients and researchers, but this is not a perfect world, and so of course people are not going to behave perfectly.

I believe that if we are going to apportion any blame then it should be placed at the doors of the scientists over the years who have distorted the science behind ME/CFS, leaving patients in the position that they are now.
I think it is unfair and inappropriate to blame patients for a breakdown in trust, between patients and researchers.
To do so shows a lack of understanding of the history of ME, and the lives that members of our community have been subjected to over the past 30 years, which should be taken into account before blaming patients for anything.

 

[Phoenix Rising Team]

Remember to breathe, everyone. Also, there's always the option of resisting the urge to reply when a particular viewpoint incites anger within you.

 

[Bob]

...so the "leading world retrovirologists" have definitively and forever judged an entire community based on what can only be called acute sample bias? You realize the irony of this claim, I hope.

If any scientist decides that I've got a psychological illness, based on a few individuals involved in advocacy work, rather than looking at the full evidence, then they can't be worthy of any respect.
So maybe we would be better off without them.
If Judy Mikovits demonstrated such non-scientific bias, then all hell would break loose.

I'm just pointing out the contradictions.

But I do agree that it's a shame that our community cannot work together more harmoniously.

 

[asleep]

No irony just the fact of the matter that it was information relayed to me from a leading retrovirologist who attended the conference

The "leading retrovirologists" were never going to research retroviruses in this disease anyway. If they were, they would have followed up on the findings by DeFreitas, Martin, and Grossberg at some point in the past 20 years. Or they would have expressed interest in the findings of not only Lombardi et al but also Lo et al, etc.

This attempt to blame the patient community for "new-found" "lack of interest"--which has incidentally been extant for decades and was going to be continue to be the norm anyway--is fearmongering. Before they can get back to ignoring us and back to business as usual, they need to make this inconvenient discovery go away. Painting the patients who have raised alarms at the widespread bad faith shown by these "leading retrovirologists" as the "bad guys" is an attempt to pacify the community to more easily swallow the next political maneuver.

 

[oceanblue]

@ Ecoclimber, Redo
Sadly I fear you are right. Retrovirologists are human too - if they get bombarded by vitriol its not surprising they attribute it to patients in general rather than a few with extreme views, because that's what it feels like. They aren't going to conduct a scientific survey to see if it's representative (though they might drop in to some patient forums...).

I dont disagree with Eco's conclusion, I do disagree with his reasoning and attribution of blame. If it had any merit then the psyche lobby would immediately stop all their "research" and refuse to have anything to do with us. Peopel quite simply dont care about the opinions of people they havent met who have no influence on their lives. ME patients have no influence on the lives of retrovirologists so it's unlikely they care enough about the opinions of some of us to alter their research goals. what woudl alter those goals is teh opinion of someone who can influence their lifes - which as I've said above is probably none of us.

I think there is a difference with the Psych lobby. Retroviroloists have lots of other good projects to work on that will do just as well, but without the hassle. For psychiatrists, CFS seems to be a Holy Grail. Many years ago I came across a letter from an American psychiatrist explaining their interest: an illness that can be shown to be wholly down to psychological factors would validate a psychosocial view of illness. For him, CFS wasn't just some backwater - it was the key battleground in winning the War against a 'simplistic' biomedical view of ill health. That's why we can't shake off the Psych lobby. Though of course, there was the recent tragic departure of Simon Wessely from our particular battleground.

I'm gradually coming to terms with the fact that we're going to be able to change this through discussion or debate. Thanks to you, and everyone else, who has a go.

I've often reached the same conclusion, yet still seem to find myself coming back for more...

 

[Esther12]

If any scientist decides that I've got a psychological illness, based on a few individuals involved in advocacy work, rather than looking at the full evidence, then they can't be worthy of any respect.
So maybe we would be better off without them.

Almost everyone gets caught up in their own stupid prejudices about something. I guess you could decide that virtually no-one is worth or any respect... but we'll end up pretty isolated if we take that approach. I don't know how it's best to move forward with CFS. Careful, cautious criticism of the worst aspects of CFS research can't do any harm (actually - that's wrong. Any criticism of any psychological research seems to lead to "You're stigmatising mental health issues. You don't understand how the mind can affect the body. Naive Cartesian Dualism!!!"). It's all a bit troubling.

 

[Angela Kennedy]

The "leading retrovirologists" were never going to research retroviruses in this disease anyway. If they were, they would have followed up on the findings by DeFreitas, Martin, and Grossberg at some point in the past 20 years. Or they would have expressed interest in the findings of not only Lombardi et al but also Lo et al, etc.

This attempt to blame the patient community for "new-found" "lack of interest"--which has incidentally been extant for decades and was going to be continue to be the norm anyway--is fearmongering. Before they can get back to ignoring us and back to business as usual, they need to make this inconvenient discovery go away. Painting the patients who have raised alarms at the widespread bad faith shown by these "leading retrovirologists" as the "bad guys" is an attempt to pacify the community to more easily swallow the next political maneuver.

Key observations asleep. Thank you.

 

[Esther12]

I've often reached the same conclusion, yet still seem to find myself coming back for more...

Oops - I missed out a 'not', It seems like you knew what I meant anyway.

 

[Bob]

@ Ecoclimber, Redo
Sadly I fear you are right. Retrovirologists are human too - if they get bombarded by vitriol its not surprising they attribute it to patients in general rather than a few with extreme views, because that's what it feels like. They aren't going to conduct a scientific survey to see if it's representative (though they might drop in to some patient forums...).

Well, schizophrenia is a psychiatric disease, but it still deserves to be investigated and researched.
So even if these scientists are so unintelligent that they can (allegedly) decide that ME has a psychological basis, based on their (alleged) dealings with a few dissenting patients, then that still doesn't give them reason to pull out of the research.
So the 'psychological' argument being used in this thread is really inappropriate.

 

[leela]

Now I am not pro censorship, I am very for free speech, but many of the people whom speak should take a deep breath and count to 10 before they post. Especially when it's people who are criticized and not theories or treatments.

Redo, totally with you on this excellent point.

 

[oceanblue]

Well, schizophrenia is a psychiatric disease, but it still deserves to be investigated and researched.
So even if these scientists are so unintelligent that they can decide (allegedly) that ME has a psychological basis, based on their (alleged)dealings with a few dissenting patients, then that still doesn't give them reason to pull out of the research.
So the 'psychological' argument being used in this thread is really inappropriate.

Maybe I wasn't clear. I was saying it was reasonable for them to decide it wasn't worth being on the receiving end of all that vitriol, not reasonable of them to label ME patients has having a psychiatric illness.

 

[firefly]

Eco, your comments are an important warning, yet I also feel you are portraying a picture of unnecessary doom. The story belongs to all of us. At any point it can be turned around. Our community needs to find a way to stand for its rights, make demands, and yet do so with respect. Martin Luther King is an amazing example. Ghandhi is another one. There are models to follow. This need not be doomed. The most important takeaway, is, I believe, not to forget common humanity. Retrovirologists have needs too, ambitions, hopes, fears, motives, incentives. Let's all think twice before penning abusive personal emails to researchers. They are unlikely to produce the results we would like them to.

 

[Bob]

Maybe I wasn't clear. I was saying it was reasonable for them to decide it wasn't worth being on the receiving end of all that vitriol, not reasonable of them to label ME patients has having a psychiatric illness.

Oh, I see. I misunderstood your post ocean.

 

[asleep]

Maybe I wasn't clear. I was saying it was reasonable for them to decide it wasn't worth being on the receiving end of all that vitriol, not reasonable of them to label ME patients has having a psychiatric illness.

But justifying their future disinterest as a response to recent vitriol is a red herring. It certainly cannot explain why, for two decades, they've been so disinterested in studying a disease that looks very possibly retroviral by all second-order observations.

 

[leela]

But justifying their future disinterest as a response to recent vitriol is a red herring. It certainly cannot explain why, for two decades, they've been so disinterested in studying a disease that looks very possibly retroviral by all second-order observations.

Let's remember that we don't know yet for sure that "they" did have this response to recent vitriol.
We are just going by what Ecoclimber said. He may have reported the truth, or someone's truth, but we don't know if, who, or what yet.

 

[Sam Carter]

The "leading retrovirologists" were never going to research retroviruses in this disease anyway. If they were, they would have followed up on the findings by DeFreitas, Martin, and Grossberg at some point in the past 20 years. Or they would have expressed interest in the findings of not only Lombardi et al but also Lo et al, etc.

...

I'm not sure this is correct, asleep. If you search Pubmed you'll see that many groups have followed up on the Lombardi/Mikovits & Lo papers.

The reason for the growing scepticism is that no one, including Lombardi/Mikovits and Lo, can reproduce the original findings when samples are properly blinded.

 

[asleep]

I'm not sure this is correct, asleep. If you search Pubmed you'll see that many groups have followed up on the Lombardi/Mikovits & Lo papers.

You are collapsing the two studies into one here to make this point. Note what I said:

Or they would have expressed interest in the findings of not only Lombardi et al but also Lo et al, etc.

Yes, many labs have followed up on Lombardi et al, but I'm not aware of any that have followed up on Lo et al. That is the point. After 2 decades of ignoring this disease the "leading retrovirologists" show up with a singular, strikingly-negative focus on Lomardi et al while continuing to ignore the remainder of supporting evidence.

But I'm being generous by saying "followed up". All the efforts of the "leading retrovirologists" have been toward discrediting and disproving HGRVs, and specifically directed at Lombardi et al. There is a marked difference between discrediting/disproving and scientifically following up. Luckily, this difference is also discernible. The former can be distinguished by a number of bad faith actions: declaring you will not find something before you even begin; overreaching and definitive conclusions; unwillingness to collaborate closely with the original authors (Bieger is the only exception to this); insistence that a novel discovery be fully understood a priori without any willingness to acknowledge the inherent exploratory nature of novel discoveries; ignoring and misinterpreting data supportive of the original discovery (Lo et al, macaque study, etc); coordinated (always negative) media campaigns; appeals to "consensus" and numbers of studies without evaluation of the particulars of the data; calls for retraction on the basis that a paper is "wrong" (remember Stoye and Coffin have been calling for retraction for many months now); blocking funding to and further publication from the original discoverers, then lambasting them for speaking about data prior to publication; blocking the authors of potentially one of the largest retrovirology discoveries in a couple decades from presenting at top retrovirology conferences; a marked asymmetry in establishment criticism directed toward positive studies; actually trying to claim that exact replication is not important; etc.

We've seen these actions and behaviors in spades now for two years. And I'm supposed to accept that these actions represent a good faith, genuine scientific effort? Please.

The reason for the growing scepticism is that no one, including Lombardi/Mikovits and Lo, can reproduce the original findings when samples are properly blinded.

The only time this has happened for Lo et al is in the recent BWG paper, and I've already provided for you a number of factors that make this, at the very least, not as black and white as you keep presenting it.

 

[Sam Carter]

You are collapsing the two studies into one here to make this point. Note what I said:



Yes, many labs have followed up on Lombardi et al, but I'm not aware of any that have followed up on Lo et al. That is the point. After 2 decades of ignoring this disease the "leading retrovirologists" show up with a singular, strikingly-negative focus on Lomardi et al while continuing to ignore the remainder of supporting evidence.

But I'm being generous by saying "followed up". All the efforts of the "leading retrovirologists" have been toward discrediting and disproving HGRVs, and specifically directed at Lombardi et al. There is a marked difference between discrediting/disproving and scientifically following up. Luckily, this difference is also discernible. The former can be distinguished by a number of bad faith actions: declaring you will not find something before you even begin; overreaching and definitive conclusions; unwillingness to collaborate closely with the original authors (Bieger is the only exception to this); insistence that a novel discovery be fully understood a priori without any willingness to acknowledge the inherent exploratory nature of novel discoveries; ignoring and misinterpreting data supportive of the original discovery (Lo et al, macaque study, etc); coordinated (always negative) media campaigns; appeals to "consensus" and numbers of studies without evaluation of the particulars of the data; calls for retraction on the basis that a paper is "wrong" (remember Stoye and Coffin have been calling for retraction for many months now); blocking funding to and further publication from the original discoverers, then lambasting them for speaking about data prior to publication; blocking the authors of potentially one of the largest retrovirology discoveries in a couple decades from presenting at top retrovirology conferences; a marked asymmetry in establishment criticism directed toward positive studies; actually trying to claim that exact replication is not important; etc.

We've seen these actions and behaviors in spades now for two years. And I'm supposed to accept that these actions represent a good faith, genuine scientific effort? Please.



The only time this has happened for Lo et al is in the recent BWG paper, and I've already provided for you a number of factors that make this, at the very least, not as black and white as you keep presenting it.

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Science. 2011 Jul 1;333(6038):94-7. Epub 2011 May 31.
No evidence of murine-like gammaretroviruses in CFS patients previously identified as XMRV-infected.
Knox K, Carrigan D, Simmons G, Teque F, Zhou Y, Hackett J Jr, Qiu X, Luk KC, Schochetman G, Knox A, Kogelnik AM, Levy JA.

.......
We found no evidence of XMRV or other MLVs in these blood samples. In addition, we found that these gammaretroviruses were strongly (X-MLV) or partially (XMRV) susceptible to inactivation by sera from CFS patients and healthy controls, which suggested that establishment of a successful MLV infection in humans would be unlikely.


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J Virol. 2011 Jul;85(14):7195-202. Epub 2011 May 4.
Absence of XMRV retrovirus and other murine leukemia virus-related viruses in patients with chronic fatigue syndrome.
Shin CH, Bateman L, Schlaberg R, Bunker AM, Leonard CJ, Hughen RW, Light AR, Light KC, Singh IR.

... We did not find XMRV or related MLVs either as viral sequences or infectious viruses, nor did we find antibodies to these viruses in any of the patient samples, including those from the original study....


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PLoS One. 2011 Mar 9;6(3):e17592.
Investigation into the presence of and serological response to XMRV in CFS patients.
Erlwein O, Robinson MJ, Kaye S, Wills G, Izui S, Wessely S, Weber J, Cleare A, Collier D, McClure MO.

...We have again failed to detect XMRV or MLV-related sequences in 48 of our CFS patients, demonstrating that our failure to find XMRV in CFS tissue is not a reflection of the primers used in the amplification process...


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PLoS One. 2011 Feb 23;6(2):e16609.
Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.
Lintas C, Guidi F, Manzi B, Mancini A, Curatolo P, Persico AM.

...No MLV-related virus was detected in blood, brain, and semen samples of ASD patients or fathers. Hence infection with XMRV or other MLV-related viruses is unlikely to contribute to autism pathogenesis....


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Retrovirology. 2011 Feb 22;8:12.
Serologic and PCR testing of persons with chronic fatigue syndrome in the United States shows no association with xenotropic or polytropic murine leukemia virus-related viruses.
Satterfield BC, Garcia RA, Jia H, Tang S, Zheng H, Switzer WM.

...Using highly sensitive and generic DNA and RNA PCR tests, and a new Western blot assay employing purified whole XMRV as antigen, we found no evidence of XMRV or MuLV in all 45 CFS cases and in the 42 persons without CFS. Our findings, together with previous negative reports, do not suggest an association of XMRV or MuLV in the majority of CFS cases....

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PLoS One. 2010 Jan 6;5(1):e8519.
Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.
Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A.

...XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK....

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