Posted: Sun May 09, 2010 3:09 pm
I think that the journey is turning a full circle in some ways. The research that has been done to date has been driven by the almighty dollar. To often the research has been about modifying our disease and at the sacrifice of understanding its cause. Money can be made for ever if the cause is not found and understood. The money used in research needs to be directed by people wanting knowledge on cause not profits into the future.
It is sad that the work of so many learned and caring Dr's (BIG plug for our favourite Dr. S ) have been hamstrung by the lack of foresight of the research profession. MS Societies in particular need to be more proactive in getting the dollars driving the search to look for cause! This would enable the ability to measure the benefits of treatments such as CCSVI. At the moment there is no way to compare treatment against non treatment that will show benefit of any treatment in a true/ real/ measurable manor. This is especially true of the DMDs on the market now, you cannot prove benefit of any of them, as you cannot predict or map the disease we have. No two people have the same disease profile, or time profile, or disability profile, or quality of life profile, or disease history profile or any other profile?
There needs to be a BIG change in knowledge about our disease happening in parallel to the work of these brilliant crusaders who have made the stand to further our options.
I'll fall off my soap box now as my TN is killing me!
Enjoy your day.
It is sad that the work of so many learned and caring Dr's (BIG plug for our favourite Dr. S ) have been hamstrung by the lack of foresight of the research profession. MS Societies in particular need to be more proactive in getting the dollars driving the search to look for cause! This would enable the ability to measure the benefits of treatments such as CCSVI. At the moment there is no way to compare treatment against non treatment that will show benefit of any treatment in a true/ real/ measurable manor. This is especially true of the DMDs on the market now, you cannot prove benefit of any of them, as you cannot predict or map the disease we have. No two people have the same disease profile, or time profile, or disability profile, or quality of life profile, or disease history profile or any other profile?
There needs to be a BIG change in knowledge about our disease happening in parallel to the work of these brilliant crusaders who have made the stand to further our options.
I'll fall off my soap box now as my TN is killing me!
Enjoy your day.