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.
Office of the President
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>@Firestorm
The viruses were given the wrong name by Silverman. He was sent samples, that have been proven not to contain the VP62 plasmid when they left the WPI and NCI.. He accidentally then sequenced that plasmid and not the viruses that the WPI and NCI had isolated. Those are the same as Lo found. They are HGRVs. All the labs that have used VP62 have been looking for the wrong virus due to this mistake. That strain doesn't even exist in nature. XMRV is the name for prostate cancer, human gamma retroviruses for ME/CFS patients.
>If you listen to the recent This Week in Virology blog with the XMRV discussion on it, you will note that one of the commenters (I'm not sure which one) is now formally associated with the CAA and went out of his way to speak highly of them.
Especially in light of this T-shirt debacle, I find that really peculiar.
In general, we all would be much better off if the CAA would just go away, or at least if someone currently unaffiliated with them were to replace Kim McCleary as the head of it. I wonder what we might do to make that happen.
http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/
Best, Lisa
>@Lisa
Its the HGRV rediscovery show. Same viruses, new name.
>@Firestorm
"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."
Where is the apology though? or the one from the CAA?
>More fatal problems with the BWG.
No one sent the PBMCs from blood donors for testing! Without the PBMCs there is no way of knowing whether the blood donors were really negative for a HGRV infection.
>Write to WPI instead to ask an apology for misleading patients.
>@Anon
They have never mislead patients. Watch what you say Anon, you have to back up accusations.
>Dr. Racaniello is on the CAA's Scientific Advisory Board. By the way, the CAA is supposed to be focused on research. Did Dr. Vernon or Kim McCleary attend the IACFS/ME meeting in Ottawa? I heard the CAA had no representatives. If this is true, this is an outrage, but they don't care, as Ms. McCleary is not accountable to anyone, not even to her board.
>Here was my heat of the moment response to Dr. Racaniello's so-called apology. The passage of a little time hasn't really changed my opinion. The posting of the original image and his response to upset patients clearly reveals how clueless he is. And, unfortunately, he is fairly representative of the scientific community. Be clear, this has nothing to do with science. It is about marginalizing patients. It turns out Racaniello's on the CAA advisory board and another, less pointed, but similarly designed to hurt, image appeared on the CAA website, with Kim McCleary's byline. Marginalized by the national organization for our disease! The folks in charge at the CAA in bed with the CDC, our captors, having accomplish next to nothing in 20 years, are making fun of us. It is truly unbelievable.
Professor Racaniello,
That wasn't an apology. It was salt in the wound. Even your "apology" starts out with another dig at Dr. Mikovits, and ends by insulting the patients she has been trying to help. You seem intent on proving that you are completely lacking in compassion. Have you no understanding that there are millions of human beings who are suffering terribly from an obviously retroviral disease? Human beings that have been neglected and abused, belittled, and denied an explanation for their illness, for decades. You were taking away hope with your blog image. It was consummate to saying, the scientific community doesn't give a damn about you, just about being right, slapping down the upstart. Let's have a party, express our glee, have a good laugh at the patients' expense. The good old boys won. The balance of power has been maintained. Real science can calmly proceed. While new babies are born with it and huge numbers of patients circle the drain. It is an infectious disease. You are supposed to be a virologist. Why don't you put your energy into finding out what is there? You are behaving very badly. A disgrace to the university you work for. The patient community is completely incensed and you just made it worse. It is truly pathetic that this needs to be explained to you.
Was that composed and logical enough for you?
Sincerely,
Jamie Deckoff-Jones, MD
Harvard AB '75
AECOM MD '79
Jamie Deckoff-Jones, MD LLC
P.O. Box 190745
Hawi, HI 96719
(808) 568-0220 phone
(808) 568-0221 fax
>"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."
OMG. What a professional victim.
I've had ME/CFS for 14 years now, and am very sick, but even I can see it was meant as a joke — a takeoff on those other t-shirts.
How you can compare this to a BURNING CROSS in your yard is an insult to those who have had a burning cross in their yard, and seriously suggests someone needs some counseling.
VERY disappointed in you Jamie.
>p.s. Of COURSE it's about science.
>"It's all too emotional. When you scream at people, it's hard for them to hear you. It hurts the cause. There is a sense of entitlement that comes across and makes us an unsympathetic patient group."
Hmmm…..
>Dr. Deckoff-Jones, with all due respect, you aren't doing yourself any favors by acting like such a victim over this. Reading over what you have been writing here, I am getting the impression that you would have similarly lashed out at *anything* pointing out the growing consensus against XMRVs. That type of reaction does nothing to help with researching to find the actual cause and come up with working treatments. You are simply shooting the messenger.
>When people continue to develop their assays based on a clone never once found in nature and they do the same for the blood working group, the people infected with HGRVs are the victims. At this time the only evidence shows that that is people with CCC ME/CFS. Dr Racaniello should apologise for skipping over the fact that the Lombardi group have discovered human gammaretroviruses and that Silvermans VP62 plasmid contaminated samples were the cause of the viruses being given the wrong name. The VP62 plasmid has never ever been in the WPI or NCI labs.
>Anon 11:40 PM and 4:09 AM:
He heard me and his employer heard me. It's incredible to me that some didn't realize that they had been intentionally insulted when they saw the image. Personally I'm not interested in pandering to scientists who have no compassion for the patients, in the hope that someone will think I'm nice enough to help. I'm too old and too sick to care what they think about me. It is past time for these scientists who have failed us so miserably to justify their own existences. The burden of proof is on them.
AIDS patients got help. It required anger and political unrest. It required fear on the part of the healthy public. We should learn the lessons taught by those who have walked this road before us. ACT UP.
Reread "And The Band Played On". It is playing on for us too. Apathy and incompetence abound.
Jamie
>But where is the proof that these retroviruses cause ME/CFS?
There isn't any.
If there were, you'd be well by now, not in a wheelchair, wouldn't you?
And didn't you write about a year ago that patients who had done the best, recovery-wise, were those who stayed away from doctors?
>That is incorrect because they have not develop drugs that have the characteristics of HGRVs. HIV drugs are targeted to that virus and its behaviour. HIV patients are also never cured and people still die. Now new drugs and clinical trials will begin.
>Patricia,
Dr. Mikovits presented the "proof" in Ottawa, though whether it has reached the level of proof is debatable. Certainly, it is a worthwhile hypothesis that needs to be fully investigated. I will repost Dr. Mikovits' slides soon, with captions and a summary.
I improved when I went on arv's. So have others. We knew from the beginning that we didn't have specific drugs and we still don't. And won't, unless research into a retroviral etiology continues. I have subjected myself to sustained stress, for some time now, and have not collapsed, despite the fact that I need a wheelchair to get through airports.
I still maintain that, for the most part, the patients who have done the best have taken the fewest meds and stayed clear of doctors, or know how to use them well.
Jamie
>To add to what Jamie has said, it is worthwhile understanding that so far patients and doctors have not really understood what would work against the disease. Now they have a very good indication.
>I also don't think that male researchers who throw vituperative slings at Judy Mikovits, rather than only debating the science with objectivity do a disservice in this debate.
It mixes the whole argument with sexist attitudes, too, against women scientists or against women who dare to disagree with the old boys' network on this issue. It has smacked of that since the criticisms of the 2009 Science article began.
Why not objectivity and scientific analysis without the slings and arrows?
It's really awful for this kind of hostility to be engendered and blasted all over the media, too.
I'm very sure that the history of scientific and medical research and successes was filled with zigs and zags, bits of a discovery being true, disappointments, errors, regroupment.
It's just important the whole area of human gammaretroviruses not be thrown out without proper research. Something is making us very sick. What the heck is it?
Isn't it time for everyone to collaborate, cooperate, share information, quit the arrogance and figure this thing out? And stop have "who's right" contests which help no one at all! For our sakes and future generations who will have this disease.
I hope that Judy Mikovits can keep on doing research, along with Ian Lipkin, the virologist who is looking at many possible viral causes, and the Lights, Komaroff, Natelson and others who are looking at other possible biomarkers for this disease.
In my view, there should be a Manhattan Project to figure out this disease and treatments.
And, yes, ACT-UP had the right idea and strategy. I just wish I had the energy, along with others, to do what they did. They woke up the medical and research communities, the government and the media.
>Seeing as I'm writing with CFIDS late at night, need to correct first paragraph. Meant to say that I think those who throw slings are doing a disservice to all of us who have this disease.
If everyone who's yelling about the XMRV issue just studied what could be the cause of this awful disease and tried to figure it out, it would be so much more productive to all of us who have it.
And then the media coverage just echoes and blows up all of this disagreement into tabloid-quality stories, not serious scientific debates or anything productive.
>Two wrongs don't make a right. Writing and posting such a t-shirt is insulting and tasteless. But I am sorry to say that so is using the metaphor of "Darth Vader" for Coffin. When Coffin does all with good intensions, it's tough getting that throught at himself. I guess he's seen the movie… And also the rhetoric you've been using against the lyme community. Yes, they might be wrong, but they are doing what they can to help (just like yourself your doing XMRV treatment). Much is unknown about chronic lyme. If you ask me, some don't respond, others respond very well (good improvement), but the reason is unknown. Might be lyme, might be other things which the antibiotics work against. But as long as people does their best, I think we ought to treat them with more respect (and expect to be treated with respect ourselves, when being a guniea pig for XMRV treatment….).