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Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

Messages
49
Location
Reno, NV
Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing
URGENT: ME/CFS Patient "A C T I ON"(A Call To Impact Our (me/cfs)Nation



For All ME/CFS Patients,Families and Friends (U.S. & Non U.S.)Organizers: Robert Miller and TEAM ______ Contact: 511bobmiller42@gmail.com
For the first time people with chronic fatigue syndrome have the opportunity to make a difference in getting a drug approved for their disorder. At a public hearing on Dec. 20th an FDA advisory committee will advise whether Ampligen should become the first approved drug for chronic fatigue syndrome. As a part of that process they will review all comments produced by the ME/CFS community that are received by Dec 6th.

Ampligen presents a huge opportunity for the ME/CFS community. Not only has it been in the FDA pipeline for over two decades, it’s been the only drug under review for ME/CFS during that time. There are no other drugs waiting in the wings, no other drug companies developing drugs for this disorder; this is the culmination of decades of hope and the opportunity is large.



History has taught us that once a drug gets approved for a disease, other drugs, legitimacy and research dollars follow.

Let’s make history and get the first drug for ME/CFS approved by taking "A C T I ON" and letting the FDA Advisory Committee know the urgency you feel for FDA approved drug treatments for this disorder.
Please send in your email by December 6th, and let the Committee know what it is like to live with ME/CFS daily and how needed treatment options are.

Our Advocacy Community will update you when other significant meetings are coming up, including the FDA Stakeholder meeting in the spring and issues dealing with CDC and NIH but right now we need the Advisory Committee hear from Our Patient Community on this issue.

This drug is our AZT to the ME/CFS community. If approved we believe it will be just the beginning of treatments to come.

A Sample Email Template is below

Send To: Email address: AAC@fda.hhs.gov
Subject line: Treatment for Chronic Fatigue Syndrome - Ampligen
To The Advisory Committee Reviewing Ampligen:
My name is ___________________ I have had CFS for more than ___ years. Before I became ill I had a life that was __your story here_____. My life since having CFS has been_______ your story here_____. We need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus. We are not second class patients. According to CDC studies, CFS is comparable to MS, late-stage AIDS, Lupus, rheumatoid arthritis, heart disease, end-stage renal disease, COPD and the effects of Chemotherapy. CFS/ME effects every moment of my life. We have seen and heard of patients doing well on Ampligen. Give this community Hope by approving Ampligen. We want our lives back.

Thank you,
Full Name
Address Here

(Please Cc: emails to Robert Miller at: 511bobmiller42@gmail.com
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
December 6th! Argh! That's Thursday! I'll do my email tonight.

Come on UK, and everybody else - if this is passed in the US, it'll be the pebble that starts the treatment landslide. Everyone will benefit!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just made a signature that everyone can cut and paste into their own signature - please help yourselves.

To make a signature, pull down the drop-down menu from your name (top bar on the right), hit 'signature' and bung it in the text box and save it. Easy! Takes seconds! And your signature appears on every message you've ever written.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Bumping!

If you do just one thing for ME this year, please let it be this - it's HUGE.

Just takes minutes!
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
E-mail sent, we need to be pro active where we can. whether we believe Ampligen will get to the UK, who knows, but if it benefits some in the USA its worth our effort.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
E-mail sent, we need to be pro active where we can. whether we believe Ampligen will get to the UK, who knows, but if it benefits some in the USA its worth our effort.

Thanks, maryb.

If the FDA passes Ampligen for the US, there'll be an effective immune system treatment giving large and measurable treatment benefits to patients. It will be very hard for other countries' governments to deny their own citizens such a treatment. Even if they tried to do so on grounds of cost, at the very least they'd have to admit that ME is an immune disorder and it would change the face of research and treatment here. And in how we're seen by the public. We'd be well placed to start pulling in donations from the public to our own research charities and getting other treatments through.

I really think that FDA Ampligen approval would have HUGE benefits for ME patients worldwide.
 

Purple

Bundle of purpliness
Messages
489
Sent. Did anyone who sent the email receive an acknowledgment of their email?
 
Messages
49
Location
Reno, NV
Thanks, maryb.

If the FDA passes Ampligen for the US, there'll be an effective immune system treatment giving large and measurable treatment benefits to patients. It will be very hard for other countries' governments to deny their own citizens such a treatment. Even if they tried to do so on grounds of cost, at the very least they'd have to admit that ME is an immune disorder and it would change the face of research and treatment here. And in how we're seen by the public. We'd be well placed to start pulling in donations from the public to our own research charities and getting other treatments through.

I really think that FDA Ampligen approval would have HUGE benefits for ME patients worldwide.

I must tell you All that patients from all over the World are sending ACTION emails and it is extremely tough to read some of them, even as a patient who has dealt with much for 30 years now. Patients Need Treatment. Thank you All for supporting this ACTION.

Bob Miller
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Thank-you very much for posting this. I will be sending an e-mail.

I hope I am not being overly picky. I think good grammar is important to making a good, and effective, impression. Despite the fact that it passes my grammar check, I do not think that “Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus.” is a complete sentence. Would someone who knows more about grammar than I please comment.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sent. Did anyone who sent the email receive an acknowledgment of their email?
I did, but quite a few hours after I sent it. If it's an auto-reply it's a pretty slow robot! I think it's some poor admin assistant, so the fact that it was slow maybe means they're getting a lot of mail.

Let's keep going!

Please, if you haven't emailed yet, do it now!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thank-you very much for posting this. I will be sending an e-mail.

I hope I am not being overly picky. I think good grammar is important to making a good, and effective, impression. Despite the fact that it passes my grammar check, I do not think that “Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus.” is a complete sentence. Would someone who knows more about grammar than I please comment.

Hi, Little Bluestem. You often see this kind of sentence structure in fiction for emphasis, as a deliberate breaking of the 'rules' of grammar to get the reader's attention. I think the people reading this will be focusing on the message. If you'd rather edit your own message, that's fine, of course.