I opened an email from Dr. Racaniello’s virology blog, in my wheelchair, at the Phoenix airport Monday morning, after the redeye from Kona:
It was like opening my door and finding a burning cross in the front yard. I was so angry, I was shaking by the time I got on the plane to Albuquerque. Anyone who would engage in such a tasteless joke in order to gloat, at the expense of millions of sick people, has zero credibility as far as I’m concerned. Closed mind. Closed heart. A little man, and I am not referring to his height.
I am writing to the president of Columbia University demanding a public apology to the patient community for this obscenity. I hope you will too.
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>This was replicated from the excellent SCIENCE editorial by J Cohen and was not by prof Raceniello. It is not a tasteless joke but a statement based on the fact that xmrv is a laboratory contaminant.
>Dear Sigh,
I think you have missed the point. It has nothing to do with the science.
Jamie
>Please Dr. Jones, don't send that letter. You're really over reacting to this. I really don't think he meant much by it. He very much believes in CFS as a real disease and has done a good job covering it so far. Please think twice and don't send anything like that to cause unnecessary issues. Last thing we all need.
>On this, Jamie, I wholeheartedly agree with you.
Best, Lisa
>@Sigh
XMRV is not the contaminant. XMRV is found in people with prostate cancer. Silverman accidentally gave the wrong name to the viruses found in people with ME, which is HGRVs and nothing to do with VP62.
>No, I'm not missing the point. This is a statement that XMRV has been proved without question to be a laboratory contaminant, hence "false positive". The tests for XMRV have been shown to be unreliable, they have found specific sequences across the CMV promoter region and neomycin genes in the "positive" samples, both of which do not exist in nature in humans and were specific to the vp62 plasmid. There are some very questionable results coming from the WPI, half the original authors of the Lombardi paper have retracted their data leaving the only "evidence" for the existence of XMRV as an antibody response. Anyone with any experience in serology knows that antibodies cross react with all sorts of protiens. ruschetti "spiked" his western blot antigens with recombinant XMRV envelope. Recombinant proteins are very sticky and will bind human serum antibodies very easily. Please understand that there is so much evidence against XMRV, that all you are doing now is preventing research into a genuine cause of CFS, and this belief in a massive conspiracy is both foolish and irresponsible.
>@Anon
Complaints about Racaniello are justified. His support for this tasteless journalism and people like Alan Dove are one issue. His is commentary and willingness to prevent further research into human gammaretroviruses is not in the spirit of science.
>Sigh. You are still missing the point…
>Don't you know when you've been insulted? This isn't about science. It's about denigration and belittlement of patients with ME/CFS.
Jamie
>Of course Racaniello meant this to be a tasteless joke. He has long been delighting himself with making comments at the expense of people who are very sick. Many of us have been sick for decades, and we have watched our whole lives dissolve before our eyes. Racaniello thinks this is funny. I don't. I think anyone who thinks this situation is funny has no heart, in addition to having no brain. He is the one who has over-reacted. He is the who is pointing at people whose lives have been devastated and who suffer every single day, and he is saying "Aren't you funny?!?"
Needless to say, I agree with Dr. Deckoff-Jones. I'll be writing a letter too.
Patricia Carter
>@Sigh
XMRV was first detected in prostate cancer patients (Urisman, 2006). The true clone of the virus in those patients is VP42. In ME patients the viruses were mistakenly called XMRV, when in fact thy are HGRVs. VP62 has no relationship to HGRVs.
There is no data on diagnostically validated assays from the WPI or NCI that calls into question their assays. Data does however prove that the VP62 was not contaminating the samples at the WPI or NCI.
This is where you inexperience and non education has let you down. There were numerous experiments conducted in Lombardi et al.
Nested PCR for gag sequences from LNCaP cells that have been co-cultured with subject’s plasma or activated PBMCs
Presence of antibodies to XMRV Env in subject’s plasma
Presence of gag products by nested PCR on stimulated PBMCs or detection of viral proteins expressed by activated PBMCs with appropriate antisera.
Nested RT-PCR of plasma nucleic acid or PCR from cDNA from unactivated PBMCs
EM of the budding and maturing virus, which cannot be contamination.
The antibody used in Lombardi et al. was to the SU protein of the SFFV, which will only detect MLV viruses, not endogenous human or mouse viruses.
Please understand that you are not way out of your comfort zone with this data. You are presenting you opinions as if they were fact and avoiding the data Frank Ruscetti and the Mikovits team have presented that strongly supports human gammaretroviruses.
You interference and ignorance around gammaretroviruses is costing lives now.
You are also ignorant of the disease you are interfering in. CFS i a label, not a differential diagnosis. It is ME patients that these viruses have been found in. You are acting in a disgusting manner by attempting to circumvent the scientific process. I suggest you remove yourself from causing any further harm.
>There people are like school children too scared to get involved with HGRVs but only happy to snipe from the side lines whist remaining oblivious to the facts. I'm not surprised they posted a football shirt like they were hooligans.
>@ Sigh
If it's acceptable for Racaniello to have a t-shirt saying that when the science is not complete in CFS (we are waiting for the Lipkin study and deep sequencing HGRV research)..then we may as well claim it's ok to hate on HIV, HepB or any other possible virus carriers in the early days of research too.
But we won't. Because hating on possible virus carriers is immoral and idiotic and not what professionals should be doing with their spare time.
It's clearly an attack on CFS patients because there is no logical, academic, or scientific reason to print such an image bacically sticking two fingers up at people who have CFS who are desperately ill who have tested positive for HGRV's but still have no conclusive proof.
At the least, it's unprofessional, and the worst it's insulting and offensive.
Either way, the image gloats in the fact there is no conclusive proof, and thus the image is premature and insulting as the science is not complete.
This is a mistake by the 'teacher' (who influences others) Professor Racaniello. He should apologise now for any possible offensive caused, before his University forces him to do so. Which will only make both him and the University look bad.
>Dear Muckle and Wildaisy,
Very well said. I sent Dr. Racaniello the link, so he has an opportunity to respond. I hope he reads your comments.
Jamie
>Thank you Jamie.
I find it incredible that they would gloat as people die. They attack anyone who pushes the field forward by proving HGRVs to be associated with the disease, whilst artificially claiming to support those who have only ever used a clone, not found in nature, to produce pseudoscience.
>For the record, I expressed my displeasure to Dr. Racaniello on Monday, so he had time to respond before I posted this.
Jamie
>He still doesn't understand that they found HGRVs, not VP62. So his T-shirt is not only rude and derogatory, but incorrect.
>No, it has been proved that VP-62, which is an artificial clone, is in no way connected to the viruses detected by Frank Ruscetti and Judy Mikovits and that their positive samples were free of the VP-62 plasmid before they were sent for sequencing.
VP-62 is not representative of the viruses found in patients with ME. VP-62 in not representative of XMRVs either, so people using the VP-62 clone to optimise their PCR assays have had assays incapable of finding the gammaretroviruses in people with ME. This shows the folly of using PCR assay without determining its clinical sensitivity.
Anyone familiar with serology knows that the monoclonal antibody to SFFV env knows it only reacts with the env proteins of MuLV class gammaretroviruses.
The WPI did not use its most sensitive PCR or serology tests in the BWG as it was felt that the length of culture of PMBCs needed to produce results known to be reliable was too long.
Anyone who thinks that research into gammaretroviruses as causes of ME should be abandoned has no understanding of the science. Anyone sabotaging such research is behaving in an unforgiveable manner.
It is clear that VP-62 and 22Rv1 are synthetic viruses. It is also clear that they are not connected with any of the viruses discovered in people with ME by several researchers. Real PMRVs and XMRVs are unfortunately for the human race are replicating and inducing neurinflammatory changes in infected people.
>Every bit of evidence shows VP62 is nothing to do with the ME viruses.
>"I find it incredible that they would gloat as people die."
And please show us proof that XMRV is causing people with CFS to die?
Sheesh.
Muckie, and Jamie, you're REALLY overreacting.
>While professor Racaniello is very intelligent human being, and while he does a lot of good for the field of virology, this is sort of a sick joke.
I will have a talk with him about it.
>And Jamie,
Did you subscribe to his blog and was the email automated, or was this a personal email that you received?
>@Beth
Why are you saying XMRV. The correct name is Human gamma retroviruses. VP62 has nothing to do with ME.
ME as a cause of death has been recognised in several countries for decades. Where do I state that death is directly related to HGRVs?
I would suggest you calm down and take your time reading comments first, but I think you are too hyper and overreacting.
>I don't understand how you can compare that T-shirt image to a burning cross. I listened to the podcast, it's about the latest papers, whose results showed that XMRV is a false positive. That's all. I don't think anyone involved would think what they were doing was offensive.
I've read the Twiv blogs and listened to the XMRV related podcasts. I've always found Dr. Racaniello to be very fair and open minded. And to my knowledge he's never insulted PWC's.
Of course if I'd seen this fresh off a six hour red eye flight I might have had a different reaction too. But I really don't think it's offensive.
>Writing to the president of the university is a futile attempt since there is a disclaimer at the about section of that blog:
"All of the opinions that I write on this blog are mine, and in no way represent the views of my employer, Columbia University"
http://www.virology.ws/about/
And considering that one of the most prestigious scientific journals in the world used almost the same figure, you're just overreacting and making a mistake by attempting to alienate a person who is on the side of the patients.
>Anon 4:48,
Subscription. I read his blog, though I have been ridiculed there in the past.
Jamie
>Thank you for this Anon @ 4:33…
"Anyone familiar with serology knows that the monoclonal antibody to SFFV env knows it only reacts with the env proteins of MuLV class gammaretroviruses."
While many try to deny the existence of HGRVs, my body is producing antibodies to SOMETHING and there is other evidence of an Inflammatory Disease. My sister has also been diagnosed with Inflammatory Breast Cancer. She is in for a long, difficult fight for her life.
How could anyone make light of such findings!!!???
Once again, please excuse the Anon post.
>@Muckle
Silverman also published a paper last week showing direct evidence of contamination in his prostate cancer research. XMRV is not found in prostate cancer patients or in ME patients and to suggest that a contaminant led the way to discovering the real pathogen in ME/CFS, that just happened to be extremely closely related to that contaminant, is totally implausible.
http://jvi.asm.org/cgi/content/abstract/JVI.05624-11v1
@Dr D-J
To make such a complaint is pathetic and churlish. You, Judy Mikovits and her deranged cult like following have become an embarrassment to the ME/CFS community and are now doing far more harm than good to our cause.
Take a step back, pause and reflect on the facts before taking any actions that you may come to regret, once things have settled down.
Dr Racaniello has provided the most balanced coverage on the XMRV story and did not draw any conclusions until the science became clear. It's not his fault that XMRV/HGRV was a blow out. Take his advice and listen to the science, not an unhinged scientist who can see her career going down the pan.
>@Ed
Silverman prostate paper is questionable. MLVs and HTLV can integrate into the same neucleotide position. So it is not safe to assume 2 integration points were contamination. Nothing has been raised about the other 10 either. So XMRV is still associated with human disease.
Mouse viruses are closely related and cause a wide range is disease in them. So you assuming that's just silly for humans is only what YOU want to believe. Nothing scientifically says that doesn't happen in humans. ME patients are HGRV infected.
>@Ed
"Dr Racaniello has provided the most balanced coverage on the XMRV story and did not draw any conclusions until the science became clear. It's not his fault that XMRV/HGRV was a blow out. Take his advice and listen to the science, not an unhinged scientist who can see her career going down the pan."
Fooled yourself on that. If you knew the field you would know he is not balanced, or the word you were really looking for scientific regarding HGRVs. How can he have forgotten diagnostic sensitivity. I would like to see him attempt one show on HIV like the one he did with Goff. His employers would shut him down so fast.
You are also attacking Ruscetti and Silverman ed. Why so on edge. All of those scientists have produced data that does strongly back HGRVs infecting people with ME.
>@drosha
"Writing to the president of the university is a futile attempt since there is a disclaimer at the about section of that blog:"
Employers ignore such disclaimers when the offence is embarrassing to them. HIV deniers never last too long.
"And considering that one of the most prestigious scientific journals in the world used almost the same figure, you're just overreacting and making a mistake by attempting to alienate a person who is on the side of the patients."
What figure are you referring to?
>@Alison
"I listened to the podcast, it's about the latest papers, whose results showed that XMRV is a false positive. That's all. I don't think anyone involved would think what they were doing was offensive. "
That is incorrect. The study was designed firstly to find a test that could screen the blood supply. To do this they first prevented the long culture times of the WPI and NCI assays, as that is impractical for large scale screening. There are also the other issues that Busch has been embarrassed by, regarding controls, positives, Lo assays, Lo positives, collection tubes, the storage of 22Rv1 with tubes, and failure to use a preservative on PBMCs. Secondly as gammaretroviruses preferentially propagate in tissue and are rarely detected in blood it was not assumed that other assays would ever be able to detect the virus in blood, and obviously all the assays apart from the WPI and Ruscetti assays were optimised to VP62, which is not found in nature and has nothing to with HGRVs..
"I've read the Twiv blogs and listened to the XMRV related podcasts. I've always found Dr. Racaniello to be very fair and open minded. And to my knowledge he's never insulted PWC's."
It will always look that way if you don't have the necessary experience and cannot follow the science.
>Wow! how immature! A scientist sent that picture of a tee shirt?
That's pretty mean.
>This is pretty simple. It violates about three of the seven deadly sins.
http://en.wikipedia.org/wiki/Seven_deadly_sins
Mark
>The viruses that the WPI and NCI detected are HGRVs. XMRV is the wrong name. No data refutes that finding.
>Ed, it's "patients" (and I use that term loosely, as anyone who would speak in such derogatory terms towards fellow sufferers makes me seriously question their integrity) like you who merely parrot denialist talking points and insult patients and researchers that are an embarassment to the ME community, and also, frankly, to mankind. It's people of your ilk that have kept ME research in the dark for 30 years, and somehow you're not ashamed enough to slither away and let the science speak for itself.
>@Anon at 4:36
I am not attacking Silverman. He has shown what a truly honorable scientist he is by reviewing his work, discovering contamination and publishing those findings, despite the fact that had XMRV worked out, his name would have gone down in the history books as the discoverer. I wish Mikovits and Ruscetti would show some integrity and track down the cause(s) of contamination in their labs.
@Anon at 7:08
"Parrot denialist talking points" – This isn't some massive conspiracy, a scientific consensus has been reached.
I admit it was a bit unfair to attack Dr D-J and I apologize for that, as I appreciate all she's done. It's just so frustrating to see patients blindly refuse to accept the conclusions of the scientific community and make us all look like paranoid headcases, when most of us do not hold those views. It detracts from the true injustices that our community has been subject to over the years and weakens our case in addressing those injustices.
>Yes – it is a massive conspiracy. If it weren't, ME patients wouldn't have been abjectly neglected and abused since the 1980's. Don't be naive and study your history.
>Frank Ruscetti and Judy Mikvotis have shown the data that shows non of their sample are contaminated. If this is not good enough for you then you are questioning their honesty. I suggest if you wish to be so disgusting about these people you email Frank directly and ask him. See if you have the courage to make such a claim to his face.
They have found HGRVs as confirmed by Lo et al.
>i read an article yesterday that used the phrase "culture of cruelty". it's an obvious inference that, per Racaniello, we should now don this red t-shirt mocking ourselves. this surely fits in with the pattern of cruelty and the death of compassion in america.
to me, much better than the kkk tie-in, is the star of david that jews were made to wear in nazi germany. wear that star and admit to the infesting rat that you are, right? one more example of despicable politics in the nazi world of me/cfs. this is right up there with wesseley's death threat campaign. they clearly want to destroy this research and for whatever reason, those of us who believe in it. as if we aren't suffering enough… and that's what makes it so sinister.
>@Anon at 7:39
You're confusing the XMRV issue with things that are totally unrelated. Are you suggesting scientists from China, Sweden, UK, Germany, US, Canada and more, collaborated to hide the existence of XMRV/HGRV in patients?
@Muckle
Having not found the sources of contamination, does not mean it's not there. Though of course one source of contamination from Lomabardi et al, VP62, has been found and invalidated that study.
If Mikovits & Ruscetti can really find HGRV, then the BWG study has shown that it is no more common in patients than healthy controls and most people are infected, though half of the time they would test negative. If Dr Lo had really found HGRV, he would have been able to find it again in the BWG study. He did not, and to suggest he would deliberately or incompetently use the wrong assay, so as to get negatives, is highly offensive and unfair to him. Would you make such a claim to his face?
>Thank you, Moineau en France.
After I posted yesterday, I didn't like the metaphor I used. I was trying to show how big it was for me, and how disenfranchised we are, but it wasn't really right. Your words are much better than mine. And your metaphor is perfect on this Rosh Hashanah, day of remembrance. Happy new year all.
Yours, truly,
Jamie
>@Ed
The evidence has proven there is no VP62 contamination when the samples left for the Silverman lab from the NCI and WPI. Only the data which was the basis of giving the wrong name to the viruses was incorrect. They are HGRVs and the paper still stands.
The other multitude of experiments supports HGRVs are infecting patients, as well as Lo and Alters paper.
The 7 other labs in the blood working group all used VP62, that does not exist in nature and is not related to the HGRV findings. The blood working group also failed to have all controls screened by all labs, the patients were on medications known to cause false negatives, not all tubes were screened with validated assays, tubes were in the same lab as 22Rv1, the WPI's PBMC assay was stopped from working when the BWG failed to use Trizol, the WPI was prevented from completing the culture panels, Lo's team used the wrong assay, no lab with a validated assay screened the Lo samples before blinding.
Dr Lo I am sure will be very unhappy that his team used the incorrect assay. What more can be said. People make mistakes.
>@Muckle
"Dr Lo I am sure will be very unhappy that his team used the incorrect assay. What more can be said. People make mistakes."
It's ridiculous to suggest that the Lo lab accidentally used the wrong assay. Unless Dr Lo or Dr Alter publicly state that, no intelligent person is going to believe that was the case. After the PNAS paper and all the criticism and controversy, they would have been neurotic about ensuring that no procedures were changed, except perhaps any that were subsequently shown to be resulting in contamination.
>@ed
The did use the wrong assay Ed. You can read the details of both in Lo et al. and Simmons et al. These are facts.
>Vinnie has been embarrassed and ashamed of himself so he has now changed the image on his blog.
>Jill J asked me to post this.
I share in your outrage and was also offended when I saw this red t shirt which only served to mock a group of desperately ill patients hoping for an answer. It is disgusting behavior and he should be embarrassed.
>It is just plain bad taste coupled with the need to gloat and appear to be right. In the long run, these traits do not serve any well.
>Racaniello posted something he calls an apology on his blog: http://www.virology.ws/
What he really did was take some more jabs. Is the man incapable of acknowledging his wrongdoing? Why can't he admit it was wrong of him to mock sick people who are suffering and make them suffer more?
Patricia Carter
>Admit when you are wrong
29 September 2011
One of the lessons learned from XMRV is that it’s important for scientists to admit when they are wrong. That is why I took down the image originally posted with TWiV #150.
I had intended for the image to be a counterpoint to T-shirts worn by CFS patients proclaiming them to be ‘XMRV Positive’. I felt it was equally important to advertise the message that XMRV is a contaminant. It was not meant to be disparaging or humorous. However a number of individuals felt otherwise, and told me so in rather harsh terms.
Then I received the following email:
'I am writing with a concern about an image shown on your website/video blog TWiV.
I have been religiously following you since the first news of the findings in Lombardi et al. I regularly turn to your blog for real scientific information and not the hearsay and pseudo scientific nonsense that permeates the internet.
As a long term patient whose health is deteriorating, I find myself often discouraged by the levels that the conversation regarding CFS drops to. It seems hard to difficult at times scientists willing to work hard without prejudice towards a cure for this terrible disease.
The image in question serves only to widen the divide between patients and researchers. While people suffer, the scientific community has a chuckle at our expense.
I would ask that they image be removed and replaced with one of unity. While XMRV did not pan out, patients are still in need. We need to know the scientific community is doing all they can to save us.'
None of the earlier comments that I received about the image were logical and composed; they brimmed with vile. This respectful and reasonable request convinced me that the image was not helpful, so I removed it.
http://www.virology.ws/