Wednesday, June 2, 2010

Comments of a non-MSer Friend on Blocking Behaviour of Medical System

These are some comments from a friend who is concerned about the blocking behaviour we've been seeing from some in the medical system:
This is going so much faster than anything the medical establishment has ever dealt with.
A new stakeholder group is at the decision-table: Patients.  This group , while unwelcome, is not leaving.
I think the real medical miracle may not be in MS, rather a miracle of transparency in the eco-system of medicine.
We are watching it in real time play out.
Decision maker transparency is what is fuels this revolution.
Web-publish the people and their positions that made the decision to block key CCSVI practices.  Catalog the procedure (eligibility, delivery, etc) and connect the people and the position from which the decision was made; add to this table a paragraph description of the decision made; and a forth column containing a paragraph of its implementation.  When decision are made by committee publish all the names and the committee's mandate.
He and I are thinking about putting together an on-line database of all the individuals and groups that are making decisions that block progress on CCSVI assessment and treatment.  We'll keep you posted about our progress.


  1. I know a thing or two about websites. Let me know if I can help?

  2. Ann Kingston might be interested in a story here. If you create such a website, with a well thought out collection mechanism for the decisions this could be very effective.

    Ann would also be a wealth of information on who is making decisions.

  3. My feeling is that the nay sayers are literally afraid that testing alone will prove OUR POINT. They have been found out and are trying whatever sticks to the fridge. They are not willing to admit to anything. This will come to a head and will show their true intentions. Sorry but, am I cynical? You betcha!