This Is MS Multiple Sclerosis Community: Knowledge & Support

I'd just like to clear up something. There are accusations that I "make money" from CCSVI on Colin Rose's website. These accusations were made by members of this forum on Dr. Rose's site. I was alerted to this situation today.

1. I do not make any money from CCSVI research, testing, or treatment
2. I volunteer for CCSVI Alliance and Jeff and I have given money this year to this non-for-profit.
3. My husband and I do not need anyone's money, thank you. We're just fine. We continue to encourage research into CCSVI because it has been a life changer for Jeff. period.
4. If anyone on this forum has accusations to make, and is using my name online, I ask that they make them here, where they can be addressed and clarified and not linked to mine or my husband's name.
thank you,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Where are these posts?

That's awful. Sorry to hear that accusations like that are being made. I would hope not many people here would believe anything read at Colin Rose's site!!

That is disgusting.

I'm sorry to hear that, Joan. I encourage you to write to the administrator of that site, and the ISP, and demand the removal of those comments, and a published apology. It is libel, and Rose and the admin. (likely the same) are culpable for such as much as the author.

Better yet, have the Alliance's counsel write a notice of some threatening sort.

Perhaps set up a Google alert for selected keywords so that you can know, and act right away when this type of thing occurs.

I hope that it confirms for you that the Alliance, and you, are on the right path.

Best,

J-not

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My name is not really Johnson. MSed up since 1993

Some people can be so judgemental and hurtful. I am sorry your having to deal with this. I hope you can clear things up quickly.

Could somebody point me out to the comments? was it a while ago? I looked, but I couldn't find.

Why is Colin Rose so obsessed with CCSVI? You always have to ask youself - "who benefits" from a particular behaviour.

No one benefits - not even poor, pathetic Colin Rose.

I checked his site once, long, long ago, and was struck by his depiction of people as the agents of their own misfortune. While it may be true that we decide what, and when to eat, etc., some do not have decent role models or education as they grow up. Rather than point the finger and laugh and despise, why does this "doctor" not try to inform and educate?

He is a man who must not have 'made a name for himself' in his career, and so now lashes out by being an a-hole. Perhaps he had a few die on his table, perhaps he never helped anyone in his close mindedness. Perhaps he helped many in his field of "expertise", but he just comes off as an embittered failure to me. Maybe he wanted to be a poet, or a plumber, but his Daddy said he must be a physician. What kind of person takes pleasure from reading (or penning) his pap? It's a perversion of the physician's principle from my patient's perspective.

(11+2 pour vous, HP)

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My name is not really Johnson. MSed up since 1993

That's just awful news and I love to hear and read all that you post.

Poor sad Colin Rose has now took to trying to post in the UK forums he's so, so desperate and is fast becomeing the FALL GUY in his profession............. even if he cant see it we can and his friends are all false and would not tell him

Keep up the great work Joan.....

OK seriously, who is Colin Rose??????

You didn't deserve that Cheer. If if's any consolation, no one who knows how hard you've worked on this issue believes it.

colin rose.."thou dost protest too much"
who is this man? what has poisoned his soul?

Dear Joan,
This nonsense is not worthy of your thought, let alone your time.

"Great spirits have always encountered violent opposition from mediocre minds."
-- Albert Einstein

Jordan--I'm assuming you know how to get to the page, since you posted on it as "moreconcerned", right? If that's not you, apologies. You don't post on the Facebook page anymore, hard to answer your concerns.

I'm not going to link to Dr. Rose's page, because he uses google ads, and every click equals $. The irony is that he has ads for medical tourism for CCSVI treatment on his site...

I just want to be able to answer the accusations made about me, using my name in a public forum....without tying it to my name or making more money for someone benefiting from slander. If there are accusations, please post them on this thread.

thanks for the support, guys. The other huge irony is that I've always asked patients to stay local, bring the research to local doctors and universities, and I'm being blamed for medical tourism....just can't win.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Joan, I'm very sorry to hear about these false accusations.

There are a lot of people (me included) who are very grateful for all the time and energy that you have put in advocating for CCSVI.

Good that you clarified these false, nonsense rumors. Chin up, thick skin and let's carry on.

Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

Joan,

You are preaching to the choir except for a handful of tone deaf people on this forum. We know you, love you, support you, and owe so much to you. You are a force to be reckoned with.

Who is Colin Rose talking to, and why is anyone listening to his vile, self serving diatribes. He doesn't care about anyone but himself.

If he posts false accusations about you, threaten to sue him. He deserves nothing less and you deserve so much more.