sbr487 wrote:Eric, I apologize if you did not like what I wrote.
Anyway, here is my issue and I dont think it is even linked to MS alone.
I too don't want govt to sponsor patients for testing CCSVI condition.
CCSVI is a perfect case of a promising discovery that got completely buried.
Why - because people who have money will not fund research into it.
Why should they? I would say, in a capitalistic world in which we live, it would be totally unfair.
The same people who want it to fail will always say
- more research
- anecdotal evidence
- normal people with CCSVI
In normal circumstances, this is fine (I mean who cares) since normally we would have someone else with deep pocket who can benefit from this.
But this is not the case with CCSVI.
When a situation of this kind, I think it becomes imperative for govt to step in. Now they won't easily saying its not our job.
Now it is left to people like Drs like Zamboni, Dake etc. to put their carrers at risk just because they care about MS patients.
As someone said, extraordinary situations need extraordinary measures.
Let me close by saying that the research to isolate genetic mutations in lung and skin cancer was sponsored by a charity organization.
That should tell a lot about era in which we live.
All those big speeches, tall claims ... are just an eye wash. Its a rotten system in which we live ...
Research CAN and DOES occur outside of a profit motive, I'm not quite as cynical as you.
TFau wrote:In order to get scans, under the medical services plan, the link will have to be made - by studies. I can not get the scans under insurance (because of the lack of an accepted link from MS - CCSVI, not CCSVI - MS symptoms), so I paid for them. If the Doppler and MRV prove conclusively that I have CCSVI, there is no doubt that I need to be treated. If I am treated, and have relief, there is another anecdotal case of the link, but not proven.
It's a chicken-and-egg thing to the bureaucrats. Think Tweedle-Dum, and Tweedle-Dee...
I see what you mean, Johnson. But if a link were made between treating CCSVI and alleviating MS fatigue (which should be an easier link to make), couldn't you get insurance then? This is an honest question, not rhetorical or hypothetical.
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