VillageLife
Senior Member
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buy your self a big box of chocolates from us!! 
Interviewing Dr. Coffin
- Thread starter Rrrr
- Start date
in an earlier post i suggested that others of us reach out to and have a chat (or hold a formal interview?) with a list of other folks, people coffin mentioned in my chat with him. this is the list i suggested:
1) the Ruscettis (husband and wife team) at the National Cancer Institute
2) the folks at the protein expression lab at NCI coffin mentioned
3) Brigette Huber at Tufts, who is studying XMRV,
4) Abott labs, the lab coffin said is making the XMRV test for the national blood supply.
HOWEVER, I NOW THINK WE SHOULD NOT EMAIL SANDY AND FRANK RUSCETTI at the national cancer institute. i say this because i did email frank asking him about his upcoming Tulane Seminar on XMRV (see this thread about that seminar http://www.forums.aboutmecfs.org/sh...uman-Blood-Products-Ruscetti&highlight=tulane)
and he forwarded my email to judy mikovits, of all people, and she wrote this to me (so she replied to my email to frank, frank did not reply):
"Frank will never present anything that I don't know about. So always ask me because I need him to be able to focus on the work! One thing that is difficult for all of us right now is that the scientists get hundreds of not thousands of emails from patients and scientists are not used to this. If your congressmen/senators and representatives received as many emails as we have maybe they would do something to make the research happen faster? Most of what Frank will present in June is the methodology that we have been developing and I presented in Prague. The seminar at Tulane ... will focus on virology and cancer.
Hope all is well..we are getting there."
so i now will say that i think we should not contact the Rusettis. not sure what to say about the other scientists. clearly judy is asking us to contact our congresspeople, and her, but not the scientists. she said all this very compassionately, by the way. she was very supportive in how she wrote it all to me.
warmly,
rrrr
1) the Ruscettis (husband and wife team) at the National Cancer Institute
2) the folks at the protein expression lab at NCI coffin mentioned
3) Brigette Huber at Tufts, who is studying XMRV,
4) Abott labs, the lab coffin said is making the XMRV test for the national blood supply.
HOWEVER, I NOW THINK WE SHOULD NOT EMAIL SANDY AND FRANK RUSCETTI at the national cancer institute. i say this because i did email frank asking him about his upcoming Tulane Seminar on XMRV (see this thread about that seminar http://www.forums.aboutmecfs.org/sh...uman-Blood-Products-Ruscetti&highlight=tulane)
and he forwarded my email to judy mikovits, of all people, and she wrote this to me (so she replied to my email to frank, frank did not reply):
"Frank will never present anything that I don't know about. So always ask me because I need him to be able to focus on the work! One thing that is difficult for all of us right now is that the scientists get hundreds of not thousands of emails from patients and scientists are not used to this. If your congressmen/senators and representatives received as many emails as we have maybe they would do something to make the research happen faster? Most of what Frank will present in June is the methodology that we have been developing and I presented in Prague. The seminar at Tulane ... will focus on virology and cancer.
Hope all is well..we are getting there."
so i now will say that i think we should not contact the Rusettis. not sure what to say about the other scientists. clearly judy is asking us to contact our congresspeople, and her, but not the scientists. she said all this very compassionately, by the way. she was very supportive in how she wrote it all to me.
warmly,
rrrr
Kati
Patient in training
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In all honesty, I think this is a well meaning project aimed at getting more information. Personally I don't think we will get any more information than what we get from published papers. The info not yet published is embargoed.
The best way to support our scientists at the moment is by donations and by asking for support from our governments. Sending scientists letters, asking if we are on a research list will just slow down the process. For general inquiry for WPI, use info@wpinstitute.org. It is in the best interest of us all to let them work. Dr Judy is aware that we have been ill for decades, she is aware of the issues and she is doing the best she can. Answering e-mails will just keep her beautiful mind away from her main focus.
An impatient patient that don't want to be a patient anymore.
The best way to support our scientists at the moment is by donations and by asking for support from our governments. Sending scientists letters, asking if we are on a research list will just slow down the process. For general inquiry for WPI, use info@wpinstitute.org. It is in the best interest of us all to let them work. Dr Judy is aware that we have been ill for decades, she is aware of the issues and she is doing the best she can. Answering e-mails will just keep her beautiful mind away from her main focus.
An impatient patient that don't want to be a patient anymore.
I like the idea of asking him if you can submit some queries to him in writing, that way he will not be misquoted or misunderstood, and if there's something he doesn't want to answer, he can simply skip the question and not appear to be evasive. Love the idea! Thanks, Rrrr. YOU'RE the rockstar!
anciendaze
Senior Member
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collecting questions
There is one thing which I feel like I've learned from this thread, collecting questions and submitting them through a single person can save time for people answering questions, and might get us answers we would not get otherwise. Having this kind of process also keeps researchers aware of questions they will face when they speak in public. When they can release information, it gives them a channel to alert the patient community without having everyone constantly checking many sites, and picking up unfounded rumors.
In the next batch, I'd like to hear more about chances to participate in studies. Where should we be looking?
You have an excellent point. I did not email Dr. Coffin myself for precisely that reason.
There is one thing which I feel like I've learned from this thread, collecting questions and submitting them through a single person can save time for people answering questions, and might get us answers we would not get otherwise. Having this kind of process also keeps researchers aware of questions they will face when they speak in public. When they can release information, it gives them a channel to alert the patient community without having everyone constantly checking many sites, and picking up unfounded rumors.
In the next batch, I'd like to hear more about chances to participate in studies. Where should we be looking?
Forebearance
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thanks1
Thank you so much for sharing this with us, Rrrr!
It was so kind of Dr. Coffin to answer some questions for us.
I understand what Judy is saying about leaving most of the scientists alone most of the time so they can work. I sure want them to spend their time discovering new things about XMRV.
I did participate in the CFIDS lobby day this year, so I wrote all my elected officials!
Forebearance
Thank you so much for sharing this with us, Rrrr!
It was so kind of Dr. Coffin to answer some questions for us.
I understand what Judy is saying about leaving most of the scientists alone most of the time so they can work. I sure want them to spend their time discovering new things about XMRV.
I did participate in the CFIDS lobby day this year, so I wrote all my elected officials!
Forebearance
Transmission Questions...?
Maybe I missed something, but it seems there's no answer following these questions presented to the doctor:
"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?"
...So he didn't have an answer for these transmission questions? Could you possibly follow up? These questions are critical--treatment may be years away, but in the meantime sick people who would rather not make other people sick need guidelines to follow...
(Also, I respectfully suggest that if people could keep the basic Thank You posts to personal messages off-forum, these threads would be a LOT shorter and easier to read. Thanks...)
Maybe I missed something, but it seems there's no answer following these questions presented to the doctor:
"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?"
...So he didn't have an answer for these transmission questions? Could you possibly follow up? These questions are critical--treatment may be years away, but in the meantime sick people who would rather not make other people sick need guidelines to follow...
(Also, I respectfully suggest that if people could keep the basic Thank You posts to personal messages off-forum, these threads would be a LOT shorter and easier to read. Thanks...)
G
Gerwyn
Guest
Everything on your list is typical of the transmission pathway of a MuLV virus apart from sneezing.It is more likely to be in blood if antibody present and at higher titre and thus(hypothetically) be more transferable
what happened was, there was not enough time to ask all the questions. so that question did not get asked. yet. maybe i'll get another chance to ask more questions in the future. or someone else can instead of me. i'm actually not doing so well due to some crisis going on on my end. sigh...
But an antibody test is not available yet, right? So are you suggesting that in the future a patient might estimate how potentially contagious he is based on antibody test results?
That may be useful for the future, but, like I said, "in the meantime sick people who would rather not make other people sick need guidelines to follow," and THESE DOCTORS NEED TO HELP.
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Rrrr said:
Hi Rrrr - i very much appreciated reading this thread , thanks for all your efforts
It would be very interesting to know what John Coffin now thinks of Brigette Huber following her "performance" at the Invest in ME conference on monday. Presumably he would have been unaware at the time of chatting to you that she was going to the conference to play the "contamination card". I would very much like to know what their working relationship is like now?
VillageLife
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Don't worry as soon as a connection is proven, no time will be waisted!
girlinthesnow
Senior Member
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Rrrr, I'm sorry you are having a struggle at the moment. Thank you for all that you've done, there will always be another question.......
Take care of yourself.
Michelle
Take care of yourself.
Michelle
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girlinthesnow said:
Oops! thanks for highlighting Michelle - my hands are held up here - i read most of this thread a week ago and then dived back into it on a mission following reading stuff about the Invest in ME conf. I wrote without taking into account the most recent few posts (esp #134!!) ...so i understand how it comes across as inconsiderate.
Apologies from me for that to Rrr and i hope his/her situation improves very soon
Hi Rrrr - i very much appreciated reading this thread , thanks for all your efforts
It would be very interesting to know what John Coffin now thinks of Brigette Huber following her "performance" at the Invest in ME conference on monday. Presumably he would have been unaware at the time of chatting to you that she was going to the conference to play the "contamination card". I would very much like to know what their working relationship is like now?
it seems to me that he DID know about the contamination info, as he mentioned that as an issue in my talk with him.