Request FDA Stakeholder Meeting for ME/CFS
New Jersey Chronic Fatigue Syndrome Association
For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome) has devastated the lives of patients and our loved ones,
leaving us with an alarmingly low quality of life. Today, ME/CFS
affects the lives of more than one million Americans of both sexes and
all ages at an annual cost of at least $21 billion in direct costs and
lost productivity.
As patients and loved ones, we have suffered too long with too little
research, a disbelieving medical community, and no approved drug
treatment specifically for ME/CFS.
This has to change! We know that we need many things, such as more
money for research but, right now, legislation is being put forth by
Congress and also via the FDA to accelerate drugs for chronic
illnesses. We want to capitalize on this opportunity now to make a
change for ME/CFS. We are calling on the FDA to hold a Stakeholder
meeting to discuss approval of ME/CFS treatments.
We need the FDA to hear from as many people as possible to ensure that
the Stakeholder meeting happens.
Please write and/or call
before May 2, 2012 to request the stakeholder meeting.
Please ask your
families and friends to send letters on your behalf.
And please use Facebook, Twitter, etc. to get the word out for ACTION NOW!
A Template for the letter along with Email addresses and other details
are below.
Thank you for taking part in this effort toward your recovery!
Specifically - what is needed:
1. Your writing a letter to Secretary Sebelious as shown below with
your personal information (yellow areas). Make sure you include all
the others' email addresses when you send it.
2. Your sending copies to the Congresspeople listed.
3. Your sending this email with its instructions to any family
members and friends, doctors, etc. who might be willing to also send
similar letters to Secretary Sebelious at the very least, copying all
the other government people on the letter.
Instructions for the email:
1. Use the attached template for the letter to Secretary Sebelius/Dr. Hamburg
We ask that you follow this template as closely as possible as that
will strengthen our request.
Personalizing the email: The template has space for you to add 2-3
brief sentences about your personal story or information at the end of
the second paragraph.
a. Simply replace the personal story in the template with your own
story, adding details like how long you have been ill and how ME/CFS
has affected your life, work, finances, etc.,
If you do add a personal story, please try to keep the overall email
length to less than 1 page because it will be more likely to be read.
If you want to go more in-depth with personal stories, we ask that you
send a separate email as a follow-up after our action is done.
b. If you do not wish to personalize, just remove the personal story
from your letter.
c. Change items in the letters in in yellow to yours.
Sending the letter: When your letter is ready:
a. Cut and paste your letter directly into the body of your email.
Please do not attach as a separate document as it may not get through
email systems and is less likely to be read.
b. Add the email addresses by cutting and pasting the following lists
of emails directly into the “To” box. The one email message will go to
all addressees at one time.
2. Email addresses
[log in to unmask] , [log in to unmask],
[log in to unmask] , [log in to unmask] , [log in to unmask] ,
[log in to unmask] , [log in to unmask] ,
[log in to unmask] , [log in to unmask];
[log in to unmask], [log in to unmask]
The following addresses are the contacts for the corresponding
legislative leaders and should be included on the same mailing as
cc's.
Senator Mikulski ([log in to unmask]), Congressman Pallone
([log in to unmask]), Congressman Pitts
([log in to unmask]), Senator Murray
([log in to unmask])
The [log in to unmask] address is included to allow us to
track the number of letters sent. Please be sure to include it.
3. Contact your senator or congressional representative
You may wish to send a letter (or forward this one) to your senator or
congressional representative as well, especially if they are involved
in the Health, Education, Labor and Pension Committee or on the House
Appropriations Committee, which has a subcommittee for Health.
If you do not have an email address for your senator or congressional
representative, you can use the following links to access the contact
forms for those from your state.
Senators - http://www.senate.gov/general/contact_information/senators_cfm.cfm
Congressional representatives -
https://writerep.house.gov/writerep/welcome.shtml
--------------------------------------------------------------------------------------------------------------------
EMAIL TEMPLATE: One Email sent to those listed below
From: John Smith May 2, 2012
To: Secretary Kathleen Sebelius, Department of Health and Human Services
Dr. Margaret Hamburg, FDA Commissioner
Cc: Dr. Janet Woodcock, Office of New Drugs, FDA, Dr. Nancy Lee,
Director Office of Women’s Health, Dr. Howard Koh, Assistant Secretary
of Health, Chairman Tom Harkin, Health, Education, Labor, and
Pensions, Senator Barbara Mikulski (D-MD), Senator Patty Murray
(D-WA), Congressman Frank Pallone (D-NJ), Congressman Joseph Pitts
(R-PA),
Subject: Chronic Fatigue Syndrome: Request for Stakeholder Meeting
--------------------------------------------------------------------------------------------------------------------
I am John Smith and I write to you to request that the FDA hold a
Stakeholder meeting to discuss treatments opportunities for Chronic
Fatigue Syndrome (also called Myalgic Encephalomyelitis or ME/CFS), a
debilitating disease that affects more than one million Americans of
both sexes and all ages.
For decades, ME/CFS has obliterated the lives of patients and their
families, leaving them with a pitiful quality of life, no hope of
treatment and a medical community ill prepared to care for them.
Compounding the personal devastation is the effect on our country’s
economic well-being; ME/CFS drains our workforce and costs our economy
more than $21 billion annually. In spite of all this, little has been
done to address our situation. My son is one of those millions with
ME/CFS who have been left to rot. His life was cut down by ME/CFS at
age 22 and if nothing changes, he will be very sick for the rest of
his life, never able to work and more likely to die prematurely.
I am aware of the FDA’s role in “assessing the benefit-risk of new
drugs on a case by case basis” and in “shaping the future of medical
breakthroughs by bringing stakeholders together to identify and
overcome challenges”. Yet, ME/CFS patients continue to suffer terribly
while ME/CFS as a disease has been moved through six different
divisions at the FDA and the only treatment for ME/CFS has been stuck
in the FDA process for over a decade.
ME/CFS urges real and significant action today. I request that FDA
hold a Stakeholder meeting, including Dr. Woodcock, Dr. Lee, expert
ME/CFS clinicians, patients, product sponsor and other key
stakeholders, to explore opportunities to accelerate approval of
treatments. Approval of a drug is critical to changing the face of
this disease.
Robert Miller, ME/CFS patient/advocate, will contact you in two weeks
to confirm scheduling of this meeting.
As patients and family, we cannot allow our lives to be destroyed any
longer. This meeting must happen!
Sincerely,
John Smith
Waterford, Ct 06385
860-123-4567
---------------------------------------------
Send posts to [log in to unmask]
Unsubscribe at http://www.co-cure.org/unsub.htm
Select list topic options at http://www.co-cure.org/topics.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
|