suggestions for American journalists?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby patientx » Mon Aug 10, 2009 5:07 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/articles/A3459-2004May30.html
http://voices.washingtonpost.com/checkup/2009/04/a_big_new_survey_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.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Advertisement

Postby bestadmom » Mon Aug 10, 2009 5:41 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.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby bestadmom » Mon Aug 10, 2009 5:55 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.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

CCSVI, suggestions

Postby lobra » Mon Aug 10, 2009 11:58 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
User avatar
lobra
Getting to Know You...
 
Posts: 10
Joined: Fri Jul 31, 2009 3:00 pm

Postby peekaboo » Tue Aug 11, 2009 6:23 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?
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Dr.D

Postby lobra » Tue Aug 11, 2009 7:27 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
User avatar
lobra
Getting to Know You...
 
Posts: 10
Joined: Fri Jul 31, 2009 3:00 pm

Postby mrhodes40 » Tue Aug 11, 2009 9:48 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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby whyRwehere » Tue Aug 11, 2009 10:56 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...
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

Postby cheerleader » Tue Aug 11, 2009 11:19 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
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby chrishasms » Tue Aug 11, 2009 11:53 am

123
Last edited by chrishasms on Sat Dec 05, 2009 6:39 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby bestadmom » Tue Aug 11, 2009 12:25 pm

Hi Cheer,

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

Michelle
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby cheerleader » Tue Aug 11, 2009 12:40 pm

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
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Jamie » Tue Aug 11, 2009 1:31 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.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby Sharon » Tue Aug 11, 2009 1:43 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
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby peekaboo » Tue Aug 11, 2009 1:55 pm

Ditto Sharon's post

What about getting stent mfgr's a heads up? They could be the industry back up and $$$
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service