Friday, December 31, 2010

Great advocacy reminders and tips

Thanks, Ann!
Just came across this article from The CFS Patient Advocate.  It's about a
presentation given at ILADS this year, by the tireless AIDS advocate Dr. Marcus
Conant. Great reminders and advice!

Dr. Marcus Conant and Advocacy
In his quest to help his daughter get better, the Patient Advocate went to hear
Dr. Marcus Conant at the recent ILADS conference. Dr. Conant was one of the
courageous few that clinically engaged the AIDS epidemic in San Francisco in the
early 1980's. Dr Conant did not flinch in the face of this terrible burden
thrust upon him. Instead he treated these near dead and dying patients - and
became a great advocate for them. He knows the business of disease advocacy, and
when he speaks it makes sense to listen.

Recently Dr. Conant moved from S.F. to New York, where he is a consultant. Among
other things, he has an interest in this XMRV retrovirus. Dr. Conant sees many
parallels of the current situation with neuro-immune illness and the early years
with AIDS. An astute Dr. Burrascano invited Dr. Conant to lecture. Dr. Conant
gave his lecture without remuneration.

In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a
stirring talk enumerating a number of key points. The Patient Advocate has read
over his notes on this lecture and Dr. Conant's advice to us follows:

"What the AIDS patient learned to advocate for was not compassion from the
public, was not sympathy from the public - what they learned to advocate for was
research dollars, research funds."

"Focus energies on getting money for research. Find out the etiology of this
disease." (in this case he was speaking of Lyme)

"Focus on research, not suffering."

"Don't trust the press." "The press is not your friend." - they are corrupt and
have another agenda.

"Congress is your last resource, not your first." "The federal government is not
your friend." You first have to prove that something is there.

"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them
out." Otherwise you will have to wait until they are dead - and that could be a
long time. (Dr. Conant was not talking about deadly enemies here. He expressed
clearly that he would not waste any time on someone whose mind he could not
change. In this above quote, he was emphasizing the notion of inclusion - and of
not unnecessarily making enemies)

"Develop coordinated activism" How do we best get funds to study this disease?

A month later this presentation still reverberates in the mind and heart of the
Patient Advocate. This talk could not have come at a better time.

With ME/CFS, we stand at a crossroads. At this moment the government is sitting
on the HHS XMRV blood study group's phase II study. The government is worried
about the blood supply. The government has the data and it is pretty convincing.
What will they do and when?

Meanwhile NIH research money is not coming to the WPI. The WPI funding
applications have been turned down at least four times. They are having trouble
getting their current research published in legitimate journals. Why is this?
Whatever limited funding they have is drying up. Whether this all is by design
is anyone's guess.

Meanwhile other research into XMRV is going on around the country in both
expected and unexpected places, fueled by discretionary funding or siphoned off
from other projects. Researchers are drawn by natural interest to this new
retrovirus. Here is one recent study. And here is another (from MN, no less).
These ongoing research projects hold the key to the solution of this ME/CFS
XMRV-related illness. Science is the answer. The WPI and their affiliates
triggered this. They tripped the switch on all this research. This flashpoint
Institute needs funding in order to come up with more answers. Research is the
answer. We cannot wait any longer.

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