Interviewing Dr. Coffin

Rrrr

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thanks! i forgot to mention that i schleped out yesterday to buy him flowers to bring him, to thank him for all his work on our behalf. and of course now i have them on my own kitchen table.

YES, how do we get a clinical trial going? i am ignorant of this world. do we just need one willing doctor? how does this work? anyone know?
 

Navid

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thanks! i forgot to mention that i schleped out yesterday to buy him flowers to bring him, to thank him for all his work on our behalf. and of course now i have them on my own kitchen table.

YES, how do we get a clinical trial going? i am ignorant of this world. do we just need one willing doctor? how does this work? anyone know?
maybe a separate thread should be started with this question...using dr. coffins quotes as a point of reference as to why this is needed?!?!

i'm thinking ppl like kim, cbs, dr deck-off jones, kurt, jspotila, dr donnica (i'm sure many, many others, but these are who pop into my head right now) might have ideas...prob parvo too: but she lives in canada where the medical system is completely different.

i'll be a guinea pig : )

thanks
 
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Gerwyn

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thanks! i forgot to mention that i schleped out yesterday to buy him flowers to bring him, to thank him for all his work on our behalf. and of course now i have them on my own kitchen table.

YES, how do we get a clinical trial going? i am ignorant of this world. do we just need one willing doctor? how does this work? anyone know?
we need ethics commitee approval somewhere
 

gracenote

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Thanks so much Rrrr.

I found myself holding my breath getting to the answer to this question:
Q. The way xmrv wreaks havoc in, and causes changes to, the body, could it be responsible for the symptoms we have (see Canadian definition)? How might an XMRV infection affect immune system functions? (Could it "turn on" those HLA-DR haplotypes that make some people more susceptible to certain biological toxins, like mold and lyme?)
I will have to be patient for a response as there was no answer to be had this time.

Enjoy your flowers, Rrrr. You deserve them.

 

Rrrr

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gracenote,
I know. i really wanted to ask that and other questions, but what happened was that he'd answer a question and slide into another area that we had a question for, so i slid with him in whatever direction he went.
 

Rrrr

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i think i fixed the first website now so that it should work. also, just google coffin and tufts, and it comes up as the first hit.
 

Hope123

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Thanks for interviewing Dr. Coffin, Rrr! It was so gracious of him to try to answer our questions.

In terms of a trial, if someone starts a separate thread so it doesn't muck up this thread, I will try to comment on it when I get the energy. I don't know the exact methodology of it but one of my docs and I were talking a bit about this recently. It would likely have to be an open-label trial, involve more than one clinician (given that XMRV+'s are spread out), and would need ethical approval through a board as Gerwyn mentioned. Also, in the USA, it might need to go through the FDA Investigational New Drug (IND) protocol although as I mentioned, this needs to be check out.
 
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Gerwyn

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citybug

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Dr. Mikovits talked about waiting for trial approval for peptide T (I think) on the prohealth video. Right now they would have to be on the scattered clusters of people who have tested positive, or collaboration with WPI who can do the multiple tests--though in a few months could be another test!

Other people have also said we confirm it by treating it. That's what's missing in the CFSAC meeting and govt XMRV working groups. None of them are talking about treatment trials for CFS yet. All our letters to Sibellius etc need to say we need funding for treatment trials.
 

citybug

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I'm so impressed you did it! Here are my favorite parts, and my future questions at the end. I was holding off on giving you more questions!

Rrrr NOTE: Too sick to go in person, I spoke to Dr. Coffin via phone on May 14. 2010, for half an hour.

he's open to email questions!

With Brigitte Huber (who is currently doing a study on genetics and Mono and CFS), they are collaborating on xmrv in human virus. ** Xmrv is so close to the viruses that they find in mice .... They are working on nailing this down; that it really is in human dna that they are seeing XMRV.

** In Fredrick (the NCI), they are developing extremely sensitive assays in plasma and in PBMCs (white blood cells). They are not looking elsewhere in the body at the moment. Yes, they want to look in lymph nodes and guts [the two places the interviewer asked about, offering her own body for biopsying], but they'll do that later. Not quite so simple to do this in terms of the paper work.

A. ** How do you know if XMRV is the cause of CFS? If you treat the infection, and if you thus address the symptoms, then you know. Though others in his field may not agree the time is right, he would like to see a controlled clinical trial with antiretrovirals now: if they work to treat the symptoms, then we are on to something. When I asked how do we get a doctor on board without a paper confirming/replicating the link between XMRV and CFS, he said that this is the problem, can you get a controlled clinical trial before that association is confirmed? He said that is hard, but that he would like to see such a trial now, without more waiting.

A. ** He thinks they have a good test now [interviewer got the impression that he means they just got it recently]. It will be a good way to assess the risk to the [nation's] blood supply. The test will be available very quickly. Abbott laboratories is working on this. They were part of the HIV tests at the start. And this will become part of the screening of the blood supply. The best test will be an antibody test, as that is easier. [I was not sure if he meant that this Abbott test is an antibody test or not?]

Q. How exact do you have to be with your PCR primers to pick up a different strain or a different serotype of XMRV.
A. ** This is an area a lot of people are working on now, at Tufts, at the FDA. What is the genetic diversity of the findings We may have been mislead for one reason or another from the original study. WPI has to do an assay that would not see the mouse dna.

A. ** He thinks we'll know in a few months if there is a link between xmrv and cfs. The group doing this work is the protein expression lab at NCI. This is not the Ruscettis' doing this work.

A. ** His hope would be that someone would set up a good controlled trial. Without doing a good placebo controlled trial, we can't move forward. ... We need to lobby for a controlled trial to be set up. It would not be a bad idea to do this, though others in his field would not agree.


FUTURE QUESTIONS:

***What does it take to get a good trial to duplicate Science results which amplifies the low viral count? Does anyone have the money to do it?

Does he think XMRV is likely to have neurotoxins in the envelope?

Does the reference to mouse dna mean they need isolate and create a test that reacts only to the part of the XMRV dna that is different from the mulv virus?

They say that lab mice cannot transmit the virus. Is anyone testing wild mice and ticks?
 

Navid

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Thanks for interviewing Dr. Coffin, Rrr! It was so gracious of him to try to answer our questions.

In terms of a trial, if someone starts a separate thread so it doesn't muck up this thread, I will try to comment on it when I get the energy. I don't know the exact methodology of it but one of my docs and I were talking a bit about this recently. It would likely have to be an open-label trial, involve more than one clinician (given that XMRV+'s are spread out), and would need ethical approval through a board as Gerwyn mentioned. Also, in the USA, it might need to go through the FDA Investigational New Drug (IND) protocol although as I mentioned, this needs to be check out.
I started a new thread in the XMRV Testing and Treatments section:

How to Start a Clinical Trial w/ARV's for XMRV+'s
 

JT1024

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Will Dr. Coffin's Group at Tufts/NIH get benefit from this?

Just saw this and wondered ...


Mass. scientists get $55.5 million in stimulus money

E-mail|Link|Comments (9)Posted by Gideon Gil May 14, 2010 02:25 PM
By Stephen Smith, Globe Staff

Scientists at nine Massachusetts research centers were awarded a total of $55.5 million in federal stimulus grants today to pay for new buildings, labs, and renovations.

The Massachusetts Institute of Technology received the most, $15 million, to underwrite renovation of a Cambridge building devoted to public health research focusing on neuroscience, aging, cancer, heart disease, and novel drug deliver models. Only two other institutions nationally received that much money.

The National Institutes of Health announced $1 billion in stimulus grants today. In a statement, Kathleen Sebelius, US secretary of Health and Human Services, said the money "will not only give our world-class scientists the modern facilities they need for impact research, it will also help create and maintain jobs."

Other top recipients in Massachusetts included Tufts University ($9.5 million), the University of Massachusetts at Amherst ($7.1 million), and Brigham and Women's Hospital ($6.1 million). The remaining recipients include Beth Israel Deaconess Medical Center ($1.8 million), Boston University ($5.9 million), the Forsyth Institute ($4.4 million), Schepens Eye Research Institute ($500,000), and the University of Massachusetts Medical School in Worcester ($5.2 million).
 

rebecca1995

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Rrrr, thank SO MUCH for doing this! You totally rock!

I thought this was fascinating:
With HIV, they were surprised that the meds helped. But they did. They treat HIV with meds and the body will recover. With xmrv, he does not know if this will happen. Usually a retrovirus causes early damage, and that is the damage to the body, and treating the virus in the present does not help. This was not the case with HIV. With HIV, treating the virus *did* help, much to their surprise. If this is the same case with XMRV, that would be a good thing. But he has no idea which type of retrovirus XMRV is. We need to lobby for a controlled trial to be set up. It would not be a bad idea to do this, though others in his field would not agree.
I had never heard that before about HIV. Now we just have to hope that XMRV responds the same way!