Re: you really want to be active in the fight for lyme rights?

GregGerber_at_hotmail.com
Date: 12/27/04 

Date: 26 Dec 2004 17:22:38 -0800

a_weisman@yahoo.com wrote:
>Probably best not to make it
> Lyme specific, but tout it as a Foundation for the Cure of Autoimmune
> Disease and sweep as much under it as possible.

I would make it Lyme-specific and I would not tout the effort as the
search for an autoimmune treatment, particularly. I suspect we are
going to find a therapeutic that is NOT geared to autoimmunity but to
the immune system directly --a dysfunctional immunity revved by
persistent low-level infection or antigens in a cyclical state of
disequilibrium, this is my guess. Yale has some patents but many
patents and therapeutic concepts are elsewhere and Yale is not needed.
What is needed that they have produced could be licensed, perhaps --but
can be done without Yale. Other work is more important, and let us not
forget some of the key Yale researchers (I mean the basic researchers
who understand the chronic problem) have moved elsewhere.

>
> So we need a LOT of money GIVEN to us with NO STRINGS to start. And
> then a board that will direct research as we see fit, and that's a
> problem. To have a TRULY independent board of experts, we give up
> control. As board members they are guided by their fiduciary duty.

yes this would need to be resolved. As to start-up money, I am thinking
a million could do it, but perhaps that is naive. I really don't know,
and you would need a better expert by legions than me to tell you the
figure.

> And money from succesful treatments and diagnostics and therapeutics
> including vaccines, can be poured back into the enterprise.

yes. I am convinced there can be therapeutics for most chronic Lyme,
based on things we know or are at the cusp of knowing or can know if
the specific goal is a cure or at least treatment to efficacy. If not
curable this is treatable, I have come to believe. I think we have
learned a lot in recent years. Hey it would not be overnight, but a
Manhattan project could take a decade. The research needs to be very
directed --and that is why it has to be taken outside of NIH.

NIH has taken things on a bizarre tangent IMO what with all the
long-term (yeah right!!) antibiotic treatment studies and the HLA
emphasis (only a small percent of the chronic patients fall under that
umbrella.) None of these things are going to do ANYTHING for the
majority of the chronic Lyme patients, yet this is where NIH has put
millions upon millions in funds. What a tragic waste.

> we can spin off for profits
> with all the perqs of any company, all under the control and ultimate
> ownership of the non profit.

all these things are possible keeping in mind the issue of true patient
oversight.

>
> The problem is that until we have something more than a very general
> business plan (a cure for whatever with treatments diagnostics and
> other therapeutics along the way) it is really hard to attract
venture
> capital.

Yes, this is why the plan needs to be stepwise: A committee to search
for a CEO, hopefully someone with a vested personal interest here. You
need top people to make a business plan that will fly, let's face it.
This requires enormous expertise.

> And, harkening back to Yale, there's already some competetion out
there
> so there is no certainty and there are some competitive risks.

ROFLMAO --hell will freeze over before Yale even recognizes chronic
Lyme disease. Again, I am talking about the MDs, not the scientists
like Fikrig etc.

>
> And remember, the less tied to Lyme it is, the more possible it is to
> become something we can't control and don't like.

understanding chronic Lyme will be a key to treating many other
diseases --but perhaps chronic persistent infections as opposed to
autoimmune disease. I think that probably a very small percent of the
chronic patients have autoimmune disease though MANY perhaps MOST have
severe immune dysfunction related to other aspects, ie the tolllike
receptors and outsized inflammation caused by small amounts of
infection.

The treatment will not likely be an antibiotic but perhaps something
that restores immune equilibrium even if a small amount of infection
persists.

You also need to get to the bottom of the cyst issue. Is it a big
factor or not? This CAN be answered with science, the science needs to
be done.

>
> The best way to keep control is IF some Lyme patients were RICH
> $$$$$$$$ and were willing to provide seed $$$$$$ and be on the board.

yes.

>
> It isn't necessarily easy. That doesn't mean it isn't an idea. But is
> it viable? How to make it work?

it would be very difficult to get this to fly but on the other hand,
otherwise we're stuck with NIH science and I would be shocked if that
will get us anywhere in the next century. If I were a betting person, I
would bet against it.

So, though this idea is a longshot and very difficult to execute imo it
is also the best shot. All else is a finger in the dike.

> I think the idea of ONE patient member for such a non profit is a
> mistake. It is always a mistake to assume that anyONE can represent
> such broad interests. Better to make it several. And better to give
> them some real power, either make it difficult to outvote them
> (requiring a voting block assuming they act together) and definitely
> giving them voting power NOT ex oficio memberships.

ok

> AND please remember that it would be NECESSARY to team up with those
> who already own patents on some of the key items, some of those are
> Yalies or part of "the other side" and we have to beat them to the
> punch in order to get them to join us.

many of those with the relevant patents understand the issues, believe
me. They certainly do. One can license patents. These patents are NOT
going to otherwise be used to treat chronic Lyme in a concerted way.

> Again, why the temporary board? I may be missing something but what
is
> the benefit to that?

There needs to be a pre-effort to the effort, it needs to be
bootstrapped step-wise --so a search for the top experts can be
conducted under the umbrella of a dedicated organization.
GG

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