suggestions for American journalists?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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patientx
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Post by patientx » Mon Aug 10, 2009 4:07 pm

Though I think it's a bit premature to be giving interviews, and I'd rather see more in-depth studies published, here are a few suggestions:

Julie Stachowiak

http://ms.about.com/bio/Julie-Stachowiak-Ph-D-25262.htm

This woman writes the about.com blog for MS, and looks to have some pretty good credentials.

Jennifer Huget

http://www.pw9.co.uk/ms_stuff/ms_msposterchild.htm
http://www.washingtonpost.com/wp-dyn/ar ... May30.html
http://voices.washingtonpost.com/checku ... ey_of.html

It looks like she's also published stuff in the LA Times (probably others), though I didn't come across an email address for.

I don't know either one personally, just came across them at one time or another through internet surfing. Since both of these women have MS, they would probably have a vested interest.

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bestadmom
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Post by bestadmom » Mon Aug 10, 2009 4:41 pm

I'll contact the woman from the Washington Post. I already emailed the following:

Group Publisher friend at Elsevier-global science and medical journal publisher
Stevens Institute, NJ John Horgan runs the edit center
NY Times
head of US Dept of Health and Human Svcs
trying to get Neil Cavuto’s email - should have it tmw
Harvard journalism foundation
Boston University journalism foundation
exec dir of American Medical Writers Org
health editor LA Times
health editor Washington Post
health and science editor US News and World Report
my editors from my magazine and everyone else I know in publishing
DR. Richard Breiman - my cousin - he's a professor of radiology at UCSF and worked on the first CT scan machine.

Something will stick.

I hope to hear from someone tomorrow.

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bestadmom
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Post by bestadmom » Mon Aug 10, 2009 4:55 pm

I emailed Jennifer Huget directly, but not sure if the address is still good, it's from 2003, plus she's on Facebook and lives in CT so I emailed her thru her page. I bet she's the first to respond.

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lobra
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CCSVI, suggestions

Post by lobra » Mon Aug 10, 2009 10:58 pm

Hi cheer,

it`s such a pity: I live about 300 km away from Bologna... and what will I do? I`ll spend 10 days in California at the time of the conference. Without that plan, I sure would have booked a hotel in Bologna. Would be nice to meet you in Italy!
My opinion about spreading the revolutionary new look towards MS is that it probably will come from the patients and not from the doctors (neurologist) or the journalists. It`s them to realize, that the venous pathomechanism makes sense in a way, that they can understand and interprete their symptoms directly and even influence their gravity to a certain amount (rest, avoiding heat exposure etc). So, progress will go the "reflux-way", from those suffering from ms to those suffering from an overdose of so called "evidence based pharma treatment papers".
So the idea to find a journalist with MS seems to be a good idea.
Sorry, my english should be better.

Good luck,

lobra

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peekaboo
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Post by peekaboo » Tue Aug 11, 2009 5:23 am

Not ot hijack this thread...

lobra going to california at the same time as the symposium...does that mean you are ging to see Dr D?

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lobra
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Dr.D

Post by lobra » Tue Aug 11, 2009 6:27 am

No! (Unfortunately, I would like to see hin))

First: it`s my wife who has MS, and second: Dr. D is in Italy then (and 3: it cannot be our goal to have this treatment in US, the Swiss medical system should be able to the job - we have to wait a few months, I think).

lobra

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mrhodes40
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Post by mrhodes40 » Tue Aug 11, 2009 8:48 am

Welcome Lobra!

I hope you have a nice visit to California.

I agree with you about pharma evidence base, that evidence base is directed by commercial interest, to say that we must do only evidence based medicine is often code for only pharma approaches because some of this other stuff just can't get enough funding to be looked at unless is has commercial potential!!

Who is going to pay for 1000 people to get stent treatment and then to compile and analyze all the data from that? It is obvious there is no one with that kind of capital to support that.

This feeds into the need for us patients to be proactive and make noise if we have to to get this out there. I called the people I know who might know someone but did not get any hits. I could try a Seattle health reporter..........but a national figure with a national platform would be better.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

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whyRwehere
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Post by whyRwehere » Tue Aug 11, 2009 9:56 am

I would like to see the woman who wrote this, be there:
http://www.nytimes.com/2004/12/05/magaz ... .html?_r=1

And in the UK, this would be a good show to contact (radio):
http://www.bbc.co.uk/programmes/b006th1n

There is a contact the program team link...

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cheerleader
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Post by cheerleader » Tue Aug 11, 2009 10:19 am

whyRwehere wrote:I would like to see the woman who wrote this, be there:
http://www.nytimes.com/2004/12/05/magaz ... .html?_r=1

And in the UK, this would be a good show to contact (radio):
http://www.bbc.co.uk/programmes/b006th1n

There is a contact the program team link...
OOOH! Lisa Sanders is the doc who does the "Diagnosis" column at the NY Times- LOVE her...she also consults for the show House (We have friends that work on that show) Will try to get to her. Thanks, Why.
I heard back from Benedict Carey at the NY Times, and he was interested and is saving the info- but can't get to Italy. But it got him interested... Thanks for all the great leads, folks. BestAd and I are typing our fingers off...and thanks for all the PMs, too. You guys are the coolest.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

chrishasms
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Post by chrishasms » Tue Aug 11, 2009 10:53 am

123
Last edited by chrishasms on Sat Dec 05, 2009 5:39 pm, edited 1 time in total.

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bestadmom
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Post by bestadmom » Tue Aug 11, 2009 11:25 am

Hi Cheer,

Are you contacting the NY times doc and virgnia hughes or should I?

Michelle

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cheerleader
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Post by cheerleader » Tue Aug 11, 2009 11:40 am

bestadmom wrote:Hi Cheer,
Are you contacting the NY times doc and virgnia hughes or should I?Michelle
Got an e-mail into my friend who works on House- he knows all about Jeff's MS/ CCSVI treatment...thought that would be a good intro to Dr. Sanders. Virginia Hughes looks talented, but she's a freelancer..no regular publications...but check out her page and try her if you think...thanks for her e-mail, Chris!
thanks,
busy fingers
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Jamie
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Post by Jamie » Tue Aug 11, 2009 12:31 pm

I'm a little hungover and emotional anyway but this for some reason made me tear up a bit.

You people aren't satisfied with making yourselves or your partner/relative/friend better you want everyone to know and I think that is just dandy.

We are bombarded by the news and the media and tv telling us how bad the world is, how dangerous it is and how mean people are.

Well not all of 'em. That's for sure.

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Sharon
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Post by Sharon » Tue Aug 11, 2009 12:43 pm

Cheer - you received your invitation! I guess we should not be surprised - you are not one to be told "no" and not do something about it. FANTASTIC work!

I would think that a news organization that has a staff base in Italy would be your best bet. Neil Cavuto is an excellent idea and FOX would have an Italian base.

WE are lucky to have your energy and enthusiasm on this forum.

Sharon

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peekaboo
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Post by peekaboo » Tue Aug 11, 2009 12:55 pm

Ditto Sharon's post

What about getting stent mfgr's a heads up? They could be the industry back up and $$$

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