Date: 19 Nov 1996
From: Susan McDermattroe <Scampy1@aol.com>
To: cfs-news@cais.cais.com
Subject: letter campain to FDA

To all PWCFIDS:

We have learned from various sources that HEMISPHERx recently met with
Dr. Feigal at the FDA and subsequently submitted a proposal for an
expanded access program for their drug Ampligen.
We don't know at this time if expanded access in the United States will
be similar or not to the access provided to patients in Belgium and
Canada -- most likely not. If patients in the U.S. do not get treatment
IND (investigative new drug) for Ampligen, this means that access will
be severely limited and that the "expanded access" will be more of a
research-oriented study, on a small scale.

You have been summoned before, too submit your letters to the FDA, but they
have been too sporadic and to sparse.  The FDA must know we stand together on
this issue, and they must be made to realize, we will not give up until this
issue is resolved at once.  You can make a difference in the fight against
this illness by voicing yourselves ..loud and clear!
You must ensure that patients in the U.S. get the same access to drugs
as patients in Canada and Belgium.

 Please contact Dr. Feigal -- explain
in two or three paragraphs what is your personal experience and
suffering. Ask Dr. Feigal why patients in this country are not entitled
to the same consideration as patients in Canada and Belgium, and end
your letter, e-mail or fax with a request that HEMISPHERx and Ampligen
receive treatment IND. 

The address and fax # are as follows:  For those of you who can, please send
certified!!  
(snail mail)
DR. FEIGAL                                
FDA    Parklawn bldg.
Rockville MD.
20857

(fax#) 301-827-2520" attn. Toni Nearing  "            

This is  an opportunity to help ourselves.  We must act now, or face the
eventuality of  not having access to this drug for years to come.  If ever
PWC's get together on anything, this should be it.  There is a cure out
there, but if we want it, we have to let Dr. Feigal know this and we need
each and everyone of you to do their part on this one.  The only real chance
we may have for restored health, lies in our own hands.  We are not asking
you to get up and march down the street with a sign in your hand, we only ask
that you summon your energies together, as one, to the one person who could
help us achieve our goal of a cure for this illness.  The pen is mightier
than the sword, and now is the time to arm ourselves with the written word. 
 Tell your friends, your family, and anyone who cares about you to also send
thier letters and fax's to Dr. Feigal telling him how CFS has changed..their
lives...because of the person in their life who is suffering from CFS..the
hardship on the family, anything that will let them know, how cfs has changed
thier world for the worse. 
 Make it your priority to sit down and do this now...for all of our sake.

Thank you..,
Susan McDermattroe