The letter from CAA to the 35 is
here
Dear Cindy,
As the IOM clinical case definition discussion continues, the CFIDS Association takes
every response and each call to action extremely seriously. We do not make any of
these decisions as a person or a staff, but as an Association that seeks to advocate for
the ME/CFS community and draw on the expertise of many. We have been contacted
by members of congress for information on how they should respond to their
constituents. Yesterday we were contacted by a journalist reporting for the
pharmaceutical industry for our reaction to the letter to the Secretary calling for the IOM
contract to be abandoned.
On Monday, after weighing all input, putting this in the context of the FDA meeting and the
need for definition and regulatory guidance to industry, we released a statement in support
of the IOM contract specifying how we thought it would be most effective. Read it HERE.
Later that same day we received word that the contract had been awarded, work would
proceed with IOM and that all of the concerns advocates had raised were addressed in
the terms. Read the announcement HERE.
Within an hour of that announcement, the letter opposing the contract came out with
your signatures.
I spoke to Cindy Bateman to try to understand the letter and the controversy. Cindy
explained that the letter writing effort started a few weeks ago when there was little
information and early skepticism about the IOM contract. However, Cindy now believes
that the IOM effort as described more comprehensively in the Monday announcement is
a positive course of action. She suggested contacting those of you who signed the letter
and see how you feel now as well.
It is important that the Association make every attempt to bring clarity to this issue with
a strong voice, defining the best course of action, framed in the most reasonable tone
that is influenced by leaders in the field such as you. That is why I am reaching out to
you today.
The CFIDS Association wants to weigh all of your input and help bridge communication
between our community, the agencies and the media. Given this additional information
we have regarding the IOM contract, can you tell us - either on or off the record - where
you stand by the terms in the letter? Do you still want the IOM contract to be abandoned
and the CCC to be adopted as the official definition? If you have any misgivings about
the timing or content the letter, or feel the IOM contract should proceed as now outlined,
we need to hear from you. We will completely respect anyone that wants to remain off
the record, but we must give the patients - all patients - the guidance and proper
information they so desperately need.
Please consider sharing your response with Leigh Reynolds, our engagement manager,
who is working on the next wave of our communication on this important issue. She can
be reached at 816-863-5577 or by email at
LAReynolds@CFIDS.org. If you are willing to
go on record, that would be fantastic. If you would rather remain anonymous in your
response, we will absolutely respect that and would never betray that trust. Either way,
we look forward to hearing from you with all feedback at your earliest convenience - if at
all possible, by noon tomorrow (Friday, September 27th.)
Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America
Working to make ME/CFS widely understood, diagnosable, curable & preventable