Hey TVirgil,
How did your local news find you?
My question has been answered
Don't know date, but I'll keep everyone posted. A while ago a few of us emailed them telling them this should be on the news and we never heard back, but my friend works there and his wife has MS so he's been trying to push the story through. And Danielle - who I just met at our CCSVI meeting (who happens to have her angio appt back to back with mine) also has a friend who works there and she had been talking to him about it also...I think all of it just came together and the actual anchor called me today which completely caught me off guard, I thought if they ever contacted me it would be through email or a producer - not the anchor. pretty cool! They are trying to get a local San Diego crew to come film us while we are down there... We are waiting to hear from the clinic if the crew can film us in there or just before and after. Our appt's are Sept 1st. Ill keep ya posted or you can follow on facebook at CCSVI in Seattle
Selkie,
I am so glad you were able to get the answers you needed.
I too find it hard to absorb the intricacies of CCSVI and get overwhelmed with all the technical knowledge that seems to come so naturally to some - and I do not have MS my daughter does! I am constantly amazed at the brilliance of other members here.
We need all the info we can get even if it sometimes goes in one eye and out the other.
TVirgil,
That is brilliant!
Drury
I am so glad you were able to get the answers you needed.
I too find it hard to absorb the intricacies of CCSVI and get overwhelmed with all the technical knowledge that seems to come so naturally to some - and I do not have MS my daughter does! I am constantly amazed at the brilliance of other members here.
We need all the info we can get even if it sometimes goes in one eye and out the other.
TVirgil,
That is brilliant!
Drury
TVIRGIL- please use great caution when dealing with ANY Media. What you think you conveyed ........... may get reported quite differently.
One of our TIMS people found this out the hard way .
If I had it MY WAY [
] ...... we would have a select few CCSVI people do our talking for us.
I have suggested Dr. Hubbard as my first choice .
As much as I like pwMS being their own advocates .... having MEDICAL Professionals speak out in favor of CCSVI ...... carry's enormous weight with the public .
The exposure is great ..... but it could not work out either .
Is it Jean E. ? She has dealt with some serious medical issues.
Mr. Success
One of our TIMS people found this out the hard way .
If I had it MY WAY [
] ...... we would have a select few CCSVI people do our talking for us. I have suggested Dr. Hubbard as my first choice .
As much as I like pwMS being their own advocates .... having MEDICAL Professionals speak out in favor of CCSVI ...... carry's enormous weight with the public .
The exposure is great ..... but it could not work out either .
Is it Jean E. ? She has dealt with some serious medical issues.
Mr. Success
1eye must find this quite uncomfortable!!Drury wrote:We need all the info we can get even if it sometimes goes in one eye and out the other.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
I imagine if they're going to do the news item on the facility premises, they'd have to get permission from the administrator, unless they're interviewing you off-site?
After reading Mr. Success's caveat, I would tell them you want to know exactly what questions they'll be asking you and sign something to that effect; if they ask something other, they will have to edit it out. I see his point - CCSVI is something most of us know about better than most doctors, and the media too has been fairly skeptical so far. I'd want to find out what their angle or slant on the story will be, and it's entirely appropriate for you to be informed as to what they'll be asking you.
Though other patients have been interviewed by a friendly media - best to be informed beforehand! Good luck! Sept 1st will be here soon & wishing you the best possible outcome!
After reading Mr. Success's caveat, I would tell them you want to know exactly what questions they'll be asking you and sign something to that effect; if they ask something other, they will have to edit it out. I see his point - CCSVI is something most of us know about better than most doctors, and the media too has been fairly skeptical so far. I'd want to find out what their angle or slant on the story will be, and it's entirely appropriate for you to be informed as to what they'll be asking you.
Though other patients have been interviewed by a friendly media - best to be informed beforehand! Good luck! Sept 1st will be here soon & wishing you the best possible outcome!
I think Joan, Marc, Dr. Dake and others have experienced interviews where their words were used in a negative-slanted article. We have seen this here!
I've heard that journalists are your best buddy when you're talking, but that's over as soon as they've got what they need from you.
I've heard that journalists are your best buddy when you're talking, but that's over as soon as they've got what they need from you.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
The anchor who called me has gone through having a brain tumor, brain surgery etc and is very interested in this as a way to HELP people w/ MS - at least that's what she said.
They have received A LOT of letters, emails about this and one way or another there going to do a story. Also she talked about the upcoming CCSVI study that will be done in Seattle- they will probably throw that in story also.
The Hubbard family knows about this and gave me permission to mention them to the media and they will most likely be contacted to speak about this. Also the facility is speaking to it's director to see what, if any thing can be filmed on site (would be w/o mentioning facility or Dr names)- will most likely be before and after interviews. We can't keep this from the media just because they may spin it wrong, of course I am sure they'll throw in the German studies etc as they did when they reported on Carol and MSkateers fundraiser for Dake. But is someone w/ MS see's it and does their research this information could change their life! And seeing that we have a large group in Seattle of people going through this, they will have people they can contact to point them in the right direction. Also, there is a Naturopathic Dr here who has MS and is about to be treated for CCSVI - they have her info also for a possible interview, she is a great advocate for this as she is a ND. We will see what happens. How are people going to learn about this if we who are going through it don't speak up??
They have received A LOT of letters, emails about this and one way or another there going to do a story. Also she talked about the upcoming CCSVI study that will be done in Seattle- they will probably throw that in story also.
The Hubbard family knows about this and gave me permission to mention them to the media and they will most likely be contacted to speak about this. Also the facility is speaking to it's director to see what, if any thing can be filmed on site (would be w/o mentioning facility or Dr names)- will most likely be before and after interviews. We can't keep this from the media just because they may spin it wrong, of course I am sure they'll throw in the German studies etc as they did when they reported on Carol and MSkateers fundraiser for Dake. But is someone w/ MS see's it and does their research this information could change their life! And seeing that we have a large group in Seattle of people going through this, they will have people they can contact to point them in the right direction. Also, there is a Naturopathic Dr here who has MS and is about to be treated for CCSVI - they have her info also for a possible interview, she is a great advocate for this as she is a ND. We will see what happens. How are people going to learn about this if we who are going through it don't speak up??
That sounds fantastic, no more worries.
I got burned by the Wall Street Journal article, which played a role in Dr. Sclafani getting shuttled into the irb process and my treatment appointment with him being canceled.
I got burned by the Wall Street Journal article, which played a role in Dr. Sclafani getting shuttled into the irb process and my treatment appointment with him being canceled.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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HubbardFoundationLexi
- Newbie
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Clarification about the MRI
Hi All,
Alexandra here, from the Hubbard Foundation. It seems there is a misunderstanding based on an email conversation I had with one of you.
We run the entire Haacke protocol with the addition of fMRI at our facility, which includes much more than a standard MRI of the head and neck. Details of the different tests involved in the Haacke protocol can be found on our website, www.hubbardfoundation.org or Dr. Haacke's site.
If I am correct in recalling the conversation, I was asked if the foundation would also be scanning for spine lesions- and I said that the only gadolinium enhanced MRI portion of the test looks that the head and neck, not at the entire spinal column. The gadolinium enhanced portion is only part of the Haacke protocol.
Another point that may be confusing is that we only ask for a prescription for an "MRI diagnosis MS" and not for each individual test. We consider the prescription for the "MRI diagnosis MS" sufficient to perform the entire protocol as it address the issue of Gadolinium injection.
I am sorry for any misunderstanding, we run the entire Haacke protocol, not just a standard MRI.
If you have any more questions, please e-mail me at HubbardFoundation@gmail.com
Alexandra here, from the Hubbard Foundation. It seems there is a misunderstanding based on an email conversation I had with one of you.
We run the entire Haacke protocol with the addition of fMRI at our facility, which includes much more than a standard MRI of the head and neck. Details of the different tests involved in the Haacke protocol can be found on our website, www.hubbardfoundation.org or Dr. Haacke's site.
If I am correct in recalling the conversation, I was asked if the foundation would also be scanning for spine lesions- and I said that the only gadolinium enhanced MRI portion of the test looks that the head and neck, not at the entire spinal column. The gadolinium enhanced portion is only part of the Haacke protocol.
Another point that may be confusing is that we only ask for a prescription for an "MRI diagnosis MS" and not for each individual test. We consider the prescription for the "MRI diagnosis MS" sufficient to perform the entire protocol as it address the issue of Gadolinium injection.
I am sorry for any misunderstanding, we run the entire Haacke protocol, not just a standard MRI.
If you have any more questions, please e-mail me at HubbardFoundation@gmail.com
Hey folks, as a P.S. and so as not to cause any more confusion about the Hubbard Foundation who have been wonderful about answering my questions, can we continue the digression about the media in a new thread? I hate to think I'm causing distress to the Hubbard's because of the title of this thread... unless I can go back and change it, lol.
I feel extremely guilty for starting this thread to begin with !
Thank you all for your help - I just don't want to cause any confusion. Hubbard is an excellent choice.
I feel extremely guilty for starting this thread to begin with !
Thank you all for your help - I just don't want to cause any confusion. Hubbard is an excellent choice.