UK Turf War on CCSVI - Daily Telegraph 12 Jul p23

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

Postby alanbrowne » Mon Jul 12, 2010 1:39 am

I'm famous at last :D
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Postby ClaireParry » Mon Jul 12, 2010 3:43 am

Thats really great Mark. A full and concise piece. Its disgusting that we have to 'worry' for want of a better word about the way our Neuros may react to us voicing our opinions.
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Postby L » Mon Jul 12, 2010 5:01 am

Wishing you the best Mark!
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Postby Blaze » Mon Jul 12, 2010 5:29 am

Thanks Mark. I had lunch here in Canada on Saturday with a friend and her sister, who was visiting from Scotland. The Scottish sister, who is a retired nurse, was not aware of CCSVI and didn't think it had received much publicity in Britain. She wanted to know more because she has a friend in Scotland with MS.

I have sent the link to her, so she will be taking this back to Scotland with her (in case her friend hasn't seen it).

Well done. I look forward to updates.
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Postby shye » Mon Jul 12, 2010 5:56 am

Great article Mark--
Keep us posted on your progress...
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great

Postby joge » Mon Jul 12, 2010 6:06 am

Hi Marc,

I translated the article in Dutch and put it on the website ccsvi.nl

http://www.ccsvi.nl/forum/viewtopic.php ... 6982#p6982
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Postby bretzke » Mon Jul 12, 2010 6:48 am

Mark-

That's the best CCSVI article, yet. How did you make it happen?

Have you had any improvement since your procedure in Greece?

Brian
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Postby MS_HOPE » Mon Jul 12, 2010 8:40 am

Congratulations on the article, and your CCSVI treatment, Mark! What a huge contribution to informing your counterparts in your country and, through the internet, around the world! Sincerely wishing you have significant improvements - keep us all posted!

PS We may be Yanks, but my husband and I LOVE the Brits' dry sense of humor!
CCSVI:  Making Sense of MS
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Postby ozarkcanoer » Mon Jul 12, 2010 9:00 am

Very good article. I especially like the fact that the article points out that Dr Zamboni does not deny that MS is autoimmune and that he also doesn't call the CCSVI treatment a cure. Too many news articles lately have used the statements that Zamboni believes that MS is vascular and not autoimmune (FALSE) and that Liberation is a cure (FALSE).

Mark, I've always regarded you as one of the more rational members of this board and still believe that is true. I am very happy that you made this happen for you. I am in the unhappy position of having been diagnosed with CCSVI at BNAC but with no recourse to treatment. Maybe my determination to have the procedure done at home has something to do with it. I am looking forward to hearing about any results of the treatment from you. I have been reading the thread where people post if they have no improvements and I start to doubt.

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Postby cheerleader » Mon Jul 12, 2010 9:49 am

Great job, Mark. You're an articulate and rational spokesman. Have reposted at FB. Thanks for going public. I know it's a bit daunting, but it's appreciated. Continue healing and keep us all posted,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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turf war

Postby blossom » Mon Jul 12, 2010 11:31 am

markw, that is such a great article. you would think that anyone reading this article no matter what sickness they have or any medical professional or anyone with a little common sence would conclude that there is no legitimate reason that people with ms should be denied testing and treatement. this may sound a little off color but the "TURF WAR" is what it is. not just neuro.'s but everyone else that stands to "LOOSE from our GAIN". i wish we could get someone that is really good at making statements with "POLITICAL CARTOONS". people always read them and they really have an impact. "PICTURE" a "DOG" representing "NEURO'S", "DRUG CO.'S", "MS SOCIETY"ETC." holding onto this bone which is "US". "THIS DOG is a growling", he has a glare in his eyes and he will bite and attack "ANYONE OR ANYTHING" that threatens his "BONE"! truth in humor. some will say this may be unprofessional but myself everytime i see a neuro. or read the ms society's hogwash or think of how the legal drug lords influence our care i just see that "DOG HOLDING ONTO HIS BONE"!! i think we all have to carry that big stick but walk low. again, i liked your article and that you got it out there.. blossom
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Postby Rokkit » Mon Jul 12, 2010 11:51 am

Mark, you've done an excellent job, my friend.
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Postby thisisalex » Mon Jul 12, 2010 12:46 pm

thank you Mark, i appreciate you went public!
way to go!

regards
alex
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left out from online version

Postby TMrox » Mon Jul 12, 2010 2:29 pm

Unfortunately the online version of the daily telegraph does not cover all the featured in the printed version. Here are the three key things missing.


1) Main title (in big font) ‘It is a turf war, and we are the losers’


2) Then the printed version provides Mark’s story (what is reported online), and continues with Alan Brown’s story:

‘It is amazing to be a proper Dad again’
Alan Brown, [pictured right], is 43 and was diagnosed with MS in 2001. He lives in Milton Keynes with his wife and three young sons, where he runs an IT software company. He had two obstructed veins ublocked in May this year at a clinic in Poland.

“Two years ago things started going downhill. I had major fatigue, and weak legs and arms. I heard about CCSVI earlier this year and began researching it, emailing everyone I could about testing and treatment. I went to Poland in May [cost including flights and accommodation was £3,200], and they found a blocked right jugular vein and partially blocked left.

I didn’t notice anything immediately, except my left foot, which had always been cold, was warm.

I flew back and had to get a bus and a train back to Milton Keynes, but didn’t feel tired at all. That continued. Usually, I’d get home from work, sit on the sofa, have dinner, then go to bed exhausted.

Now, I get home, play with my boys, cook dinner, help put them to bed, do a bit of DIY –and I’m still not tired at 11pm. I still have MS, I cant’ walk very well or far, my hands are still numb, my arms still ache, but our lives are transformed. I have a new zest for life, my brain feels clear and alert. It’s amazing to e a proper Dad again.”

3) The article continues with a comment by Dough Brown

‘Unproven therapies’
Dr Dough Brown is head of Biomedial Research at the Multiple Sclerosis Society. He says: “While we understand the freedom of an individual to make a choice about tests and treatments, we do not recommend unproven therapies.

Chronic cerebrospinal venous insufficiency (CCSVI) is an interesting avenue for research, but these are early days. We need more research to demonstrate further evidence of a link between CCSVI and MS. If that could be shown, we would want to see clinical trials of the treatment.

Most of our members are pleased with our evidence-based position, and we are open to funding research, and inviting applications.

We are part of an international push to find out a soon as possible whether or not CCVI is a factor in this disease”
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Postby Daisy3 » Mon Jul 12, 2010 2:42 pm

Great article,

I read the online version. Shame they did not display the full article online.
I hope that this article makes its way to people who were not aware of CCSVI. Everyone deserves to at least be aware of the potential options out there for them.
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