While I think this is ideal, frankly it will get us absolutely nowhere with research progress aka cures because everything else involved is so dysfunctional that right now our voice would not mean much of anything.

Let's look at one of the most common chronic illnesses: the ulcer as this highlights what the real problem is. We now know it is caused by a ubiquitous intestinal bacteria h. pylori. The amazing scientist who eventually earned the Nobel prize, Australian scientist, Barry Marshall had to go to extraordinary lengths to have his hypothesis and research acknowledged by his peers. I am listing key highlights from the timeline of peptic ulcer disease and h. pylori.

-In 1875, it was first thought that ulcers may be caused by bacteria.

1958. Greek scientist (Lykoudis) successfully treats his own gastoentiritis with antibiotics.

1964- Lykoudis presents his antibiotic treatment for PUD at a meeting of the Medico-Surgical Society in Greece. He is largely shunned by the medical establishment.

1966- Lykoudis' manuscript is rejected by the Journal of the American Medical Association.

1968- Lykoudis is fined 4,000 drachmas for treating PUD patients with his treatment, which includes antibiotics.

1981-1984- In June 1984, Barry Marshall self infects by ingesting h. pylori after several years of being shut out by scientific medical peers. He takes antibiotics and is relieved of symptoms.

1987- Another scientist also self inflicts.

1994- Realized by NIH, that h. pylori is general cause of Peptic Ulcer Disease.

2005- Marshall awarded Nobel Prize.

How many years did that take? How many millions of dollars? Plug in PD to this timeline or any other malady...how do we compare. Taking us seriously is key, but it is far more important to focus on changing this paradigm. Is MJFF or any non profit research arm helping by accepting and operating within the confines of the status quo? MJFF may fund innovative research but is it enough when researchers who think outside the box are shunned. In my mind, this is our problem; we do not want for lack of research but more from the conviction, passion, and/or courage of people who want to truly make a difference. It can be done now with the money and resources we already have, so why aren't we making any progress? This is what holds us back.

We can talk about e-patient Dave, how we hold the answers, how all it takes is leaving no stone unturned for a cure (MJF), etc. Point is the answers may be a boulder, not a small stone, staring us in the face already, but if the people in power aren't willing to acknowledge it or cut off the lines of creative inquiry because they fear the house of cards will cave or that we will find the emperor has no clothes, having patients directly involved at this time seems futile.

Think of the bigger questions that research fails in: they continue to ignore bacterial roles in chronic disease and they refuse to test for antibodies or immune etiologies to PD and many other conditions. They defy the history of disease; can you think of a longstanding, controlled disease that has no infectious cause? Polio, Syphillis, TB...all of them viral or bacterial in nature. I am beyond words here any more. Look at all our chronic incurable "mystery" neuro illnesses now: Autism, PD, AD, Schizophrenia...even depression is now known to be due to inflammation and most likely autoimmune. This is not rocket science or time travel here; yet, not one of these mysterious, complex diseases have been looked at exhaustively as immune mediated. Why is that?The question is let's look at why the BBB is so easily penetrated and how is it the autoimmune system goes haywire- that is the common thread.

We are not wanted as active participants because we threaten an industry that thrives on us remaining ill for life. The only answer is to establish our own independent think tanks or team of scientists willing to stand out. We have people with the money to do this; think Lorenzo's Oil (movie), but no one with the financial means seems to care or wants risk it, instead they start yet another foundation. <sigh> Do people really believe that this is all that we can do, our hands are tied? Money talks; it can be done. Paula, your idea on the genome would be a good starting point. 23andme is on the right track but could go farther. MS patients are funding their own trials and heading their own research initiatives; we at least now are talking about it? What is the next step?