This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

The Sunday Mirror is a UK paper that caters for the man in the street. I only buy it to look at the sports pages and my wife likes the celeb stuff. I nearly choked on my cornflakes when I opened my paper and saw Gibbledegook! Alex - a bit of makeup would have been good.

http://www.mirror.co.uk/news/top-storie ... -21973347/

I'm sick to death of seeing pictures of Joan Beal (Cheerleader) on every MS site I visit and the picture of Gibbledegook has pushed me over the edge.

Where will it all stop? Lyon in a porn film? Dignan appearing in the next Harry Potter movie?

This quest for fame will backfire - be warned.

I've had a chat with my mate Simon Cowell and he has agreed to front a new show starting in the spring call "MS Idol". The first audition will take place in San Francisco and then New York. Relatives of MS sufferers can also apply. So I'm looking forward to seeing Lyon in his shiny shirt singing My Way and Joan's sword swallowing act. Simon has asked that contestants do not use the words "cure" or "stent" during the audition. The aim of the show is to show that MS suffers have entertainment skills and are positive - I'm afraid Sou should not apply given the second requirement. There will be auditions in Canada - apparently Jimmylegs' seven veils dance is very good (the breast enhancement op was money well spent). I'm not sure Harry Z's balloon modelling in a thong will be a hit given that he uses the balloons to spell out "BIOGEN ARE EVIL".


Ian

Hey Ian,
I think the only way to get CCSVI tested and to help people is to get it publicised.
A newspaper needs a story in order to want to print an article and if it isn't "sexy" enough they will dismiss it.

We all know that these articles are well over exaggerated and in most cases the facts are really wrong but we have to look at what this is doing for us MS patients.

The more CCSVI is publicised the more pressure will be placed on the dr's and government to test it.

IF it proves to have some merit this will benefit MS patients as the vascular link will be explored and more grants and funding will go into it.

In the future this will help MS patients being treated for the better!! (hopefully with a dual approach vascular and immuno drugs)

Hi.

The article is awful and, IMHO, it can do more harm than good. CCSVI treatment is promising. But it is definitely not the cure of MS, yet. What pisses me off is that the role of informing patients is assigned to the local MS societies. Since they not only don't inform patients, but try to conceal facts about CCSVI, it is patients that will have to spread the word, plus journalists chasing THE article.

I decided to be removed from the local MS society after realizing that it has been used as a "political squatting entity" and had no other reason of existence than telling us how dreadful MS is and how perfect drugs we have. "Don't think they don't work! It is MS a difficult disease, not the drugs useless! Please, take them!"

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Bromley if you could have the scan done would you?. Are you not curious at all if you have CCSVI? we're all suppose to have it.

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Had ms for over 19 years now.

.

Hmmmmmmm. Bromley hinting that Lyon may be appearing in a porn film??? As a followup Lyon references the song "Pants To The Ground" on Youtube. Coincidence????

Ian, sorry to say that Harry Potter thing didn't happen. Turns out they had already cast the "perfect" Hermione. Whatever, Emma Watson.

Bromley if you could have the scan done would you?. Are you not curious at all if you have CCSVI? we're all suppose to have it.

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Had ms for over 19 years now.

lol @ brom

@ sou: i never got together with my MSS local.. think i called them too soon, i was in that first crazy someone-tell-me-what-is-happening-what-is-going-to-happen-what-do-i-do post dx panic.. the attitude from their end of the phone was so wrong for me i never called them back. similar to how i never went back to my dx'ing doc at the mcmaster ms clinic (neuro, yes - ms guy, no).

It's too bad the press can't paint the proper picture of what is going on with this whole movement. The press release was positive , but to promising. Thats news for you. The word cure shouldn't have been printed as that's not the way anyone with reason is painting CCSVI.
Joan, you didn't deserve to be lashed at in that manner. You are doing fantastic things. You have the admiration of thousands of people. We surely appreciate the efforts! There is bound to be a huge variety of mixed feelings on this subject and I guess that is one extreme of the type of reaction you can expect to see. I am a believer in CCSVI. That being said, you are working on this with the potential to help millions of people.I'm not expecting this progress to fail, but even if it did, no one can fault you for your enormous efforts. Thankyou!

I second that..

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Had ms for over 19 years now.

.

We old-timers of TIMS know just how enamoured Ian is with the UK MS establishment. Nirvana to Ian would be swaggering down Oxford Street arm in arm with Dr Coles on one side and Dr Compston on the other.

The CCSVI 'open-minded' members of TIMS are very appreciative of all Joan has done to dig into and communicate the mystery of CCSVI and its possible connection to MS. She should be well-recognised for her magnificent contribution. Maybe she could even relocate to the UK where Ian's boss could put Joan's sword to good use and knight her! An operatic Dame Joan has a certain ring about it.

However, I do agree with Ian regarding the danger of extensive promotion of CCSVI, at this early stage, through the mass media. I think it's a real problem. Do people really think that items in the Mirror, Huffington Post, CTV or other Murdoch-inspired media outlets are really going to bring more genuine doctors on board with CCSVI? Rather to date, all it seems to have done is to send hoards of MSers into a crazy feeding-frenzy. At this stage, we don't need more patients on board with CCSVI, but more doctors. To think that Simka, Dake, Zamboni etc are each receiving thousands of communications a day from hopeful patients, must be counter-productive. Where will it all end?

Cheer says we are presently building a CCSVI lifeboat, but all I see is people scouring the decks of the M.S.Titanic with megaphones, telling everyone to jump ship into a lifeboat that's not even built yet!

We all know how medical science works - steady as she goes........

I say no more media stories, but each of us who has a sense of commitment to CCSVI, should be ernestly beavering away behind the scenes to assist the already committed doctors whilst individually doing the one-percenters needed to bring other likely new doctors into the CCSVI loop.

Phil

phil, it can't be denied that the media has made the medical establishment sit up and take notice. i agree that there are two sides to this coin, but so be it .

and brom is just being brom. even though he loves my dancing (not to mention that he suggested and paid for my breast enhancement surgery) he still told me to shut up about vit d already. everyone knows that vit d is important! (or if they don't, they should)

I think there are 2 benefits of the media stories. Most importantly, they give information to people with MS who wouldn't otherwise have heard about CCSVI. The second benefit is that the groundswell of interest created by the media seems to have led to some funding. I don't think media does anything at all to help or inform the doctors and researchers, other than the funding.