This Is MS Multiple Sclerosis Community: Knowledge & Support

The unnecessary restrictions on the way the panel members can participate is typical of the MSSC. Again, it is a show intended to make people believe that they may actually want to listen.

Doesn't the closed door tell you all you need to know?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

thanks for the '' bump '' Pollyanna ..... not sure how the words ...

" Sal would you ..... ..... " got in there ..... I never said that .....

as for the MS Society ..... I have always maintained the position that they [ the MS Society ] appear to be exercising great caution with guarding the pool of money they disperse annually ..... to worthwhile MS researchers.

you can bet CCSVI has caught the eye of the " Tony Soprano's " out there ......... and they are setting up shop ..... as we speak.

now for the good news.

Dr. Zamboni's great discovery is rapidly gaining status as a viable treatment for MS. And other possible medical dilemas.

This has been achieved with the support and great effort of many wonderful medical professionals ...... where do I start ? ....... Dake , Haacke, Sclafani , Hubbard , McDonald , Simka , Zivadov , and on and on ..... and on .

The MS Society needs to give these fine people an audience ....... and start supporting their research ........ as it seems to be the action to take .....that the members of the Society .......want ......yesterday.



Mr. Success

Sorry, success for the unintentional bump!
But what a great idea.....no???
Yves continually spews word salad.
Why is there not a client advocate in the room?
Alas, this may be a lost opportunity!

I would prefer transparency too.

Me again,

This is groundbreaking stuff everyone - for it to do the greatest good for the greatest number of people, we need baby steps and that means research and discussion and debate.

Pollyanna said:

Blaze said:

The MS Society and the CCSVI Working group are truly trying to do their best for everyone with MS. that's why they have invited some of the world's brightest lights in CCSVI to come and speak to them. Honestly, if they didn't want to hear the message wouldn't they just ignore the Drs. instead of meeting with them?

the makeup of the CCSVI working group includes one of the Canadian IRs leading a treatment trial (Dr. Machan from UBC) and includes several people with MS. I know some of the panelists personally.

From the Ms Society's CCSVI Working Group Biographies (I gave the link in an earlier post):


Look, lets celebrate the forward movement and exchange of ideas, not criticize everything that's not exactly to our liking. No one is criticizing the SIR because they announced they need more research, yet we seem to jump on any other organization that suggests the very same thing.

MSRelly

To MSRely,
I appreciate your sentiment.
You clearly must work for The Society.
Most unfortunately believe that
The best predictor of future behavior
Is past actions.
National has not cultivated trust.
Many sadly feel this is a PR ruse.
Please prove me wrong.

Polly Anna

Hi Pollyanna - I don't work for the MS Society, but I do volunteer work for them.

I sincerely hope that our (mine, doctors, the world's) increasing knowledge about CCSVI helps lead us to what we are all striving for: an end to MS. Just like any treatment or therapy, they don't all work for all people, but just understanding what they can and can't do, helps us solve the puzzle.

What makes you say it doesn't work for all people? It has not yet been standardized, we cannot yet say what the efficacy is.

It is true that in the past it has not worked for everyone, but this may be due to complications and inappropriate treatments, all of which can be improved in patients yet to be treated.

I cannot imagine that better blood flow to a damaged organ would not be an improvement in itself.

Hi Cece,

I was just trying to say what you said but in a different way. I can't get the underline to work, so anything in caps below isn't shouting!!

I meant that treatment or therapies of ANY kind for ANY disease/problem don't work for everyone all the time. And that our understanding (i.e. study) can help us figure things what does and doesn't work. You hit the nail on the head when you said That's why the interventional radiologists' voted overwhelmingly to study this more. And, thankfully, studies will include treatment arms.

Thanks Lyon. I'm just trying to take the pot off the boil a little. I have seen too much of "If you're not with us, you're against us" happening in the CCSVI world and its wrong. Both sides, pro and con are guilty.

I mean what I say when I say [quote]I sincerely hope that our (mine, doctors, the world's) increasing knowledge about CCSVI helps lead us to what we are all striving for: an end to MS.

Does the CCSVI working group include people with diagnosed or treated CCSVI?

I appreciate the intent. You asked earlier why it was ok for the SIR group to call for more research but not ok when the MS Society of Canada does it. The initial response from the MS society was so negative. Last summer the Canadian government reversed itself on funding treatment trials and the MS Society played a role in advising them against funding. The SIR group has many interests and diseases treated but the MS Society has only us, the MS patients. We expected more, there is a feeling of betrayal, and trust cannot be rebuilt in a day. We will see what comes of this meeting.

msrelly - would you agree that CCSVI needs to be discussed in a more open Forum ? That seems to be the desired action ...... that TIMS members want .

I remain very impressed by the openess and honesty about CCSVI .... that CCSVI investigators ..... demonstrate.

They give us ..... all they know ..... warts and all ....... and let people decide if the treatment is for them. Or if it is effective .... or not.

Personally , I hate a yes man. And I do not trust anyone who tell's me what I want to hear ...... rather than the plain cold hard truth .

The MS Society should provide audio & video coverage ..... for those
wanting to see and hear ...... the context of that meeting .

I don't see why not .



Mr. Success

msreilly, do you have any insight into why Dr. S and Dr H are not able to use slides to demonstrate their findings of CCSVI? Yves Savoie's response to my inquiry about this seems completely hollow.

As Tim Donovan of New Hope for MS says "Seeing is believing." Why wouldn't people who claim to want to learn want to see real examples from real people with MS?

I continue to think it's because they don't want to open their minds anymore that they want us to open our veins.

Mr Success, I agree with your last statement.
Our rights are being trampled.
So what have we got to lose by asking Sal or David to wear a wire.
Or any of the other participants.
Tape the session, or video it.
Where are the clients being represented?
Let's open the doors.
Let's let fresh air and sunlight in.

Polly