carolyn, you bring up a point that i have been thinking about including here perfectly. i think the full page article did have an effect. but, like so many other things that take place with research, we aren't told about it.

can you imagine what we don't know? People have used our ideas and have heard us. There are so many social factors involved as well. With MJFF, you have celebrity and all that goes with it. With all of the orgs, there is the medical community and pharmas, who views patients as "subjects".

It's ranking by wealth. But what entitles the orgs and scientists to make all the decisions? As rick and girija were discussing, clinical trials never get enough recruitment and seem to just go away. We can't have a treatment if we never know about the trials. Then problems with trials were uncovered.

Knowledge is power. If you don't have money, knowledge is the next best thing. We are being denied knowledge by virtually everyone involved in solving our illness. It's getting better. I think we would understand the financial reasons for certain decisions, if we had all of the information. Being kept in the dark, with little feedback, is quite effective in maintaining control and it fosters guessing and paranoia.

But carolyn, you are right, the ad was ignored by the key players, and the effects were kept from us. But we've gotten enough feedback to know that the effects were indeed felt. Gregw is also correct in saying that during that time period, we did get public support, even from the Lancet.

But..then ...we, too, have our own list to work on. like convincing people that in person we don't always whine....lol [speaking for myself]
paula