What truly boggles my mind is the fact that the MSSC was the first out the door, after the November 2009 W5 CCSVI piece, to claim our vascular condition as their territory...and yet they keep also saying that evidence is needed to establish a link between MS and CCSVI before further studies can be done to establish whether treatment of CCSVI will have any improvement on MS.
So the move to claim CCSVI from the get-go - was it just to stall any actual testing and treatment of MSers for this condition?
SBR487, these are deliberate acts, aren't they? I feel now that every step taken/not taken by the MSSC has been a deliberate and calculated step with a specific agenda in mind.
It is an organization. A corporation. If you work full time for it, your job depends on it. So do the jobs of everybody you work with, and a lot of the people you see all the time. If you have invested time or money in the MS industry, you don't want to see that go down the drain.
You will defend. You will tell yourself, and everyone else, you are only interested in the patients. But it isn't true.
Regardless of how you might feel about it, you will be ordered to defend, which will enhance that impulse quite effectively.
PwMSS (Persons with MS Societies) are interested in the continuance of their jobs and business dealings Though they profess interest in sick people, they also have economic agendas which come first. They work for a charity with a high overhead, and are paid well.
Though they want to help, they also want the status quo. Liberation threatens, and some people do not suspect the end. Some who are too young or too sheltered, don't see MS from personal experience, have no idea. I hoped they never have to experience what some TiMS members go through. (Certainly some do seem to deserve to.)
It is heartless, the mind-numbing blatherings about placebo, when so many could be helped, saved from suffering, and saved from death. Science can be wonderful, but it is very boring to someone who is dying.
It is horrifying to see psychotic people who gain positions of power over the sick, and then are threatened when someone else tries to help them. They lash out in public against the would-be helpers, disgracing themselves and their peers.
I renounce my association with those wanna-be scions of neurology, my diagnosis of MS, the MS Societies, and my reticence to speak against them. I will fight them with all the breaths I have left.