THE INTERVIEW WITH COFFIN
NOTE: Too sick to go in person, I spoke to Dr. Coffin via phone on May 14. 2010, for half an hour. He was gracious and empathetic to our plight. I have his permission to post this info from our talk on our CFS forum, but it is important to know that though I typed his answers as he spoke, and though I tried to type them as I heard them, I may have gotten Dr. Coffin's wording or even his complete thoughts wrong. And I later re-looked at the interview and tried to clarify some of my mistyping of his thoughts and wording as best I could. Again, I could have gotten some of this wrong. So please do not quote him on any of the things written below. He really does not want to be misunderstood or misquoted. He is considering if he will do an on-the-record interview or a Q & A on our forum as a next step. He is reluctant due to past experiences with interviews with the media and a concern about being misquoted or misunderstood. He said he is always open to answering questions via email from people. As you will see below, I did not get to ask many questions, the half hour went by fast. He had to leave to have a meeting with CFS/XMRV researcher Brigitte Huber, also at Tufts. -- Rrrr
11 am starting time
Introduced me and my journey with CFS:
- Mono at 21; 7 yr remission; then pneumonia, which turned into cfs; 20 yrs later, here I am.
- Sent him my photos of the XMRV party in Oct 09 and the XMRV blood draw party a few wks ago.
Why I requested this chat with him:
- Want to ask you if I should be hopeful. If 1 million of us should be hopeful.
- After 20 yrs of not knowing why I lost so much of my life, why I'm bedridden so much, I now hope I have a retrovirus and there is a way to treat it. Am part of WPI/NIH XMRV study, will see ID doc at MGH (Felsenstein).
I'm part of a community
- we are desperate to keep up with every new development re: XMRV
- we all know you and discuss you and others involved in xmrv
- we know the science, the politics
- I asked my cfs friends what would they ask you if they were meeting with you.
- I brought their questions and hope you might answer some now or, better yet, consider doing an on the record Q&A with me or online Q&A on a CFS forum/website. If not, answer an occasional email question?
== Questions for Dr. Coffin from me & all others on our CFS forum ==
(Thanks to FireFly for helping us consolidate the questions we all had. No thanks to me, I expanded on them, making them much longer and unnecessarily complex. Coffin's answers are preceded with (**) asterisks. Questions without ** below them means I did not get to ask that question. Yet! Maybe I can later. He is thinking about doing another interview with us.)
"Tell him I think he's great.... and now instead of wanting my son to grow up to be president, I want him to grow up to be a great retro-viroligist." (His response: A worthy profession.)
"Ask if he realizes he's a rock star to us?" (His response: Laughed.)
"Ask him if he's married." (His response: Yes, he is.)
YOUR RESEARCH
Q. What is your XMRV research agenda? What will Tufts be doing on XMRV?
A. ** His agenda has components at Tufts and NCI (which started as, and is based in, the HIV research program). His interest over the years is how retroviruses work and how they coevolved with humans and other species. Yrs ago, they worked out the fundamentals of genetics of leukemia in mice and the viruses themselves -- and the mouse viruses are very close to xmrv. So similar that there is no doubt that some virus of that group is an ancestor of xmrv. He is trying to do a few things now: At Tufts: Trying to find the exact mouse virus that was the ancestor. No luck yet, but working on it. Also want to find out how xmrv is different from mice virus. With Brigitte Huber (who is currently doing a study on genetics and Mono and CFS), they are collaborating on xmrv in human virus. Hubur does not have new funding for this xmrv component of her study, but she is applying this work to xmrv, anyway, on her own.
** Xmrv is so close to the viruses that they find in mice, that they have to be extra sure that there is not any contamination (from mouse droppings, etc). 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.
SCIENCE PAPER
Q. Is the Science paper accurate? Do you think it will it be confirmed? Have your thoughts changed since the Science paper and the association of XMRV w/ CFS?
A. ** He'd feel a lot better if other studies had confirmed this [the Science paper].
XMRV LINK TO CFS
Q. Given the prevalencey rate of XMRV in the general population (3.7%) vs. the CFS population (67%, and later 95% but unpublished), can we make the assumption that xmrv is the cause of CFS? Could it be just a passenger virus? (e.g. HHV6, EBV, Cytomegolovirus, Mycoplasma, Lyme.)
A. ** Don't know this yet. Could still be some kind of passenger.
Q. What has to happen to prove XMRV is the cause of CFS, rather than a mere association? How many more papers would we need to establish consensus on XMRV as the cause of CFS? When will those papers come out?
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. Individuals doing this experimenting with antiretrovirals is not helpful like a controlled clinical trial. But with that said, he would like to read the xmrv positive doctor's blog on her ongoing self-experimentation with antiretrovirals. I should send him that link to her blog. [Interviewer's note: Better yet, maybe she should email him directly?] I asked how we could get this type of controlled clinical trial going, as I am ignorant of that world, would we need the NIH, a willing doctor, what? He said yes to the NIH and to an interested doctor. [Interviewer's note: Not sure if we NEED both or just one?] I suggested the Infectious Disease doctor I plan to see in July at Mass General Hospital and he said that would be good. 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.
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?)
OTHER VIRUS
Q. Besides simply altering the immune system, is there a way XMRV might interact with other virus (such as EBV, HHV-6, CMV) to cause disease? Like, could XMRV actually alter those viruses in some way?
COMPARE TO EARLY DAYS OF HIV
Q. How does our situation compare to the early days of HIV re: federal funding/attention and interest from scientists? Similarities in politics, development, controversy, between HIV/AIDS and XMRV's possible link to CFS? Is the gov't funding and the science moving faster or slower than with HIV?
A. ** Our situation is different from the HIV situation in many ways. CFS has been around a long time. HIV was seen to be a new disease and an infectious disease. Labs could make the association between HIV and AIDS easily. But it took a long time to break thru the prejudice. In terms of timing for our situation, 7.5 months since the Science paper is not a long time. The science community is very mobilized since the Science paper. Had reports confirming the WPI findings come in quickly, things would have moved faster.
PUBLIC HEALTH
Q. Is it wise for countries to prevent people with CFS from donating blood at this point?
Yr thoughts on the low level of federal funding for XMRV research -- given that it's been 7.5 months the Science paper, which showed 3.7% of the healthy population has XMRV, and this could pose a threat to the general public.
TESTS
Q. Are there any reliable tests available now? (VIPdx culture, antibody test developed by Petros at Emory, others?) When will a validated standardized assay for XMRV be commercially available?
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…?]
WHERE IS XMRV?
Q. Is anyone looking for XMRV in human tissue samples (brain/nervous tissue or biopsying lymph nodes or gut or any other tissue)? Where might XMRV hide out in the body in large numbers? It doesn't seem to like blood very much -- is it hiding in some organ or other body fluid? This retrovirus seems to go "dormant," that is, it has periods of sitting in the cells and not actively replicating or floating around in the blood. Is this unusual for retroviruses? Is there another retrovirus that has that characteristic?
STUDIES AND PCR PRIMERS
Q. How exact do you have to be with your PCR primers to pick up a different strain or a different serotype of XMRV. What are the odds of picking it up with pcr in whole blood samples if the blood is old?
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… [interviewer did not understand the next part, and lost what Coffin was saying here. Sorry!] 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. [Not sure I got all this correct. Sorry.]
Q. Why did the European studies fail to detect any xmrv?
A. ** He does not know the answer to this right now. It could be they were insufficiently sensitive. 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. The NCI is putting a lot of….[did not catch this! Sorry.] In a few months we'll have a better handle on the association of XMRV with CFS. [Interviewer's note: We may not know if XMRV causes CFS, but we'll know more about the association.] The best way to get the cause issue is to do a placebo controlled clinical trial on the treatments, and if the symptoms go away, then that is the proof. Given what the interviewer told Coffin (that there were people with cfs posting online about measurable improvements while on antiretroviral within a few weeks) this does not need to be a lengthy study. It won't take years, given what I told him about anecdotal evidence of measurable improvements. And this controlled clinical study would need to measure the virus at the same time, the effects of the meds on virus replication and the symptoms of the disease.
Q. Why is xmrv so difficult to isolate? Why would XMRV be hard to detect, assuming a laboratory is competent to do ordinary PCR. All the labs reporting negative results seem to have done DNA PCR on unactivated PBMC. There was no biological amplification prior to PCR.)
TREATMENT
Q. How quickly does xmrv replicate? Can a non- or slow-replicating virus still cause pathology? How might a slow replicating retrovirus affect the body and the coarse of disease?
Q. What are the implications for treatment? Do any treatments (drugs and doses) sound promising? Does the risk of cancer diminish as XMRV is treated with antiretrovirals?
Q. Do you think antiretrovirals will be effective in vivo? Have you heard the anecdotal evidence? (A handful of people with CFS are taking AZT and Raltegravir and seeing measured improvements in 3 wks -- but for some it then plateaus.)
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. But the issue is, could one justify starting a controlled trial now, without a clear association between XMRV and CFS. [Coffin says he thinks it a good idea to do this type of study now, though others may not agree.] You'd need a good way to measure that the meds are having a good virolological effect in this study. 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.
Q. What do you think about stem cell treatment for xmrv?
TRANSMISSION
Q. How/when is it transmitted in humans? Via saliva, sex, blood, sweat, sneezing droplets in the air, touching objects? How to avoid transmitting it? Is there a difference between being culture positive vs. antibody positive when it comes to transmission?
OTHER ILLNESSES AND XMRV
Q. If you were given unlimited funds to research possible human illnesses caused by XMRV, in consideration of what is now known about how the virus acts, where it is found in the body, and your knowledge of other retroviruses, what illnesses would you study?
Q. What’s do you think of the association of XMRV and autism?
A. ** He does not know.
Q. How is looking for a virus related to CFS different from looking for a retrovirus related to MS?
EASY TO RESEARCH?
Q. Does the unusual genetic simplicity of XMRV make it a good vehicle for laboratory research?
LIKE FeLV or HIV
Q. If a comparison is made for public understanding of the illness, would you say XMRV is more like FeLV or HIV or another retrovirus?
WOMEN
Q. Why women are more affected by CFS than men are. The ratio of about 3:1 female to male seems to hold across the many studies across the years, even in outbreak situations.
A. ** He does not know.
NEXT STEPS
Q. What will come out of the XMRV conference in Sept? What will be the main talking points?
INTERVIEW?
Q. Are you available for an online Q & A or a taped on-the-record interview?
A. **He will consider this. Meanwhile, he is open to emailed questions. But this interviewer would suggest holding off on the questions for 1 week, to see if he first agrees to the on the record interview or the Q&A with our forum.
