This Is MS Multiple Sclerosis Community: Knowledge & Support

Some MS patients took to the floor to express fury that they were being discriminated against. “I want my veins opened. Why can’t I have my veins opened?” asked 51-year-old Michele Deverill of Toronto. “Why won’t MS Society agitate in Ottawa on our behalf?” Someone else made the analogy with the Heart and Stroke Society’s advocacy for the new blood-clot vacuum used on stroke victims. It was tested on 27 people before going into widespread use and subjected to no clinical trails.

http://www2.macleans.ca/2010/06/14/ms-s ... -ceo-says/


$$$ the MS industry

What I don't understand...

The MS Society is a charitable organization which purports to serve and support the community of PwMS.

The MS Society does NOT in any way shape or form have the right to decide for PwMS their choice, (or not) of which of the currently available medications they take or which (if any) assistance they seek or accept.

Put a little differently, the MS Society's have no jurisdiction, and no "right" to decide anything for any PwMS. They're job is to assist the MS community. Period.

My questions are as follows:

How did the MS Society's get so far afield that they now have the power to influence both the direction of future research AND the present treatment option for PwMS.

and further...

Who is on the board, what are their backgrounds, and why are they in such opposition to what seems to be the majority of PwMS now? What authority do they really have? ( I say this in part after discovering that the infamous board member who sent the reportedly "widely circulated" email admonishing folks to vote for established encumbents in this years AGM is, of all things, a "publisher of children's books.")

To a certain extent I get it. We (and our friends and relatives and co-workers etc etc etc) gave huge dollars to the MS Society's as they appeared to be "on our side" ... to be supportive of our plight, to be our champions in a world that would just rather forget us....

But then the scientific research veered off in an unexpected direction and it appears that that the MS Society's just kept going with the status quo.. More Neuro's...yes, let's throw more Neuro's at the situation even though this new information came not from Neuro's (gasp), but from a whole other medical field and their Dr's...namely Vascular Dr's and Interventional Radioligists.

IMHO...the MS Society's and Neuro's for that matter have responded to the development of CCSVI reserach, rather ostrich like. "If we stick our heads in the sand and perhaps kick some sand out blindly at them with our feet, perhaps that will scare all the new people, who may have a legitimate point or five, away!"

Perhaps this is a pedestrian observation. Perhaps I've spent too much time thinking (and writing) about this tonight.

In any event, thanks for providing an outlet for my frustrations tonight.

Cheers,
Hope
(PS...I spent most of my evening writing to the President and CEO of the Royal Victoria Hospital in Barrie re: Barb Farrell....I urge you all to do the same).

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Dx March 2003
Avonex

Sorry Erinc...I didn't mean to interupt your thread...
When I first responded, it was my intention to speak to the issue you raised...then I just got carried away in my own issues...

Apologies,
Hope

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Dx March 2003
Avonex

thank you. that's what message boards are for.