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http://www.facebook.com/events/121302214705174/
Why not support help us have more treatment options? 

Online Email Campaign- per ME Advocate Robert Miller



URGENT: ME/CFS Patient “A C T I ON” for Patients, Family and Friends Organizers: Robert Miller Patient/Advocate, Cort Johnson (Health Rising), Billie Moore Patient Advocate and TeamContact: 511bobmiller42@gmail.com On December 20th, ME/CFS patients rose to the Challenge and Sent in 750 personal testimonies to the FDA Advisory Committee, requesting for Ampligen approval. 30 Patients, family and clinicians testified. The final vote was split, the panel will recommend to FDA to not approve Ampligen on 3 questions, but voted Yes, that Ampligen’s safety profile is adequate for approval on a 4th question . So We Must “ACT”. This ACTION will be emailing the contacts below Everyday until FDA approval. We deserve treatment Now. The Final decision date is February 2nd , but it could come any day. We all need to start emailing Today and Everyday. (The template below is for you to follow, you can just copy and paste for ease.) Email Contacts Are: HHS Secretary Katherine Sebelius, FDA Commissioner Margaret Hamburg, Director Janet Woodcock, Deputy Director Sandra Kweder, Senator Richard Blumenthal, Senator Kay Hagen, Congressman Joseph Pitts_________________________________________________________From: PLACE YOUR EMAIL ADDRESS HERE To:Kathleen.Sebelius@hhs.gov,margaret.hamburg@fda.hhs.gov,janet.woodcock@fda.hhs.gov, Sandra.Kweder@fda.hhs.gov,Monica.volante@mail.house.gov,CC:Karen_Wade@hagan.senate.gov,Eamonn_Hart@blumenthal.senate.gov, 511bobmiller42@gmail.com Subject: Approve Ampligen Now ———————————————————————————————————————————From: PLACE YOUR NAME HEREThe FDA should approve Ampligen by Feb 2, 2013. The advisory committee voted that Ampligen’s safety profile is adequate for approval. Patients and our physicians must have the opportunity to access a treatment that has shown such promise for ME/CFS patients. Failure to do so will leave us with no FDA approved options to treat this disease.The FDA has stated that ME/CFS is a serious and life threatening disease. Yet, without treatment, patients and their families are left to suffer. Many of us are bedbound or homebound. We are in constant pain and suffering, abandoned to bodies that torture us every day and demands that we parse out our activities like a single piece of bread that must last for a month. According to a DePaul study, patients are more likely to die prematurely from cancer, heart failure or suicide. This is the long-term reality of living, untreated, with ME/CFS. Imagine living with an untreatable disease so terrible that you would choose suicide to escape it.750 written and over 30 in-person patient testimonies, including that of the AAC patient representative, conveyed how this devastating disease impacts our lives and the imperative of weighing the opportunity to benefit against the risk of no treatment to escape from this terrible physical burden and get back even a piece of our lives.For us, even small improvements have a very significant impact on our quality of life, which were dismissed by FDA statisticians. It’s evident that Ampligen has provided benefit to patients, with the testimony and data pointing to meaningful change in our ability to function and care for ourselves. The true nature of this disease and the plight of patients have been ignored for too long. Patient testimony and patient and clinician experience provide evidence that this drug works in many patients. A number of AAC members agreed that Ampligen helps and other members noted that they saw an indication of effectiveness in some patients. Let patients and their doctors decide whether the only treatment in FDA clinical trials for ME/CFS is the right medicine to provide relief from the living death that is our reality today. Remember that the disease itself has a collateral impact that creates its own serious risks for patients.The advisory committee voted that Ampligen’s safety profile is adequate for approval.Approve Ampligen by Feb 2, 2013. Anything less is condemning ME/CFS patients to years more of continued suffering without any hope of relief.Just Do it!
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http://www.facebook.com/events/121302214705174/

Why not support help us have more treatment options? 

  • Online Email Campaign- per ME Advocate Robert Miller
  • image
    URGENT: ME/CFS Patient “A C T I ON” for Patients, Family and Friends 

    Organizers: Robert Miller Patient/Advocate, Cort Johnson (Health Rising), Billie Moore Patient Advocate and Team
    Contact: 511bobmiller42@gmail.com 

    On December 20th, ME/CFS patients rose to the Challenge and Sent in 750 personal testimonies to the FDA Advisory Committee, requesting for Ampligen approval. 30 Patients, family and clinicians testified. The final vote was split, the panel will recommend to FDA to not approve Ampligen on 3 questions, but voted Yes, that Ampligen’s safety profile is adequate for approval on a 4th question . 

    So We Must “ACT”. This ACTION will be emailing the contacts below Everyday until FDA approval. We deserve treatment Now. The Final decision date is February 2nd , but it could come any day. We all need to start emailing Today and Everyday. 

    (The template below is for you to follow, you can just copy and paste for ease.) 

    Email Contacts Are: 
    HHS Secretary Katherine Sebelius, FDA Commissioner Margaret Hamburg, Director Janet Woodcock, Deputy Director Sandra Kweder, Senator Richard Blumenthal, Senator Kay Hagen, Congressman Joseph Pitts
    _________________________________________________________
    From: PLACE YOUR EMAIL ADDRESS HERE 
    To:Kathleen.Sebelius@hhs.gov,margaret.hamburg@fda.hhs.gov,janet.woodcock@fda.hhs.gov, Sandra.Kweder@fda.hhs.gov,Monica.volante@mail.house.gov,
    CC:Karen_Wade@hagan.senate.gov,Eamonn_Hart@blumenthal.senate.gov, 511bobmiller42@gmail.com 
    Subject: Approve Ampligen Now 

    ———————————————————————————————————————————
    From: PLACE YOUR NAME HERE
    The FDA should approve Ampligen by Feb 2, 2013. The advisory committee voted that Ampligen’s safety profile is adequate for approval. Patients and our physicians must have the opportunity to access a treatment that has shown such promise for ME/CFS patients. Failure to do so will leave us with no FDA approved options to treat this disease.

    The FDA has stated that ME/CFS is a serious and life threatening disease. Yet, without treatment, patients and their families are left to suffer. Many of us are bedbound or homebound. We are in constant pain and suffering, abandoned to bodies that torture us every day and demands that we parse out our activities like a single piece of bread that must last for a month. According to a DePaul study, patients are more likely to die prematurely from cancer, heart failure or suicide. This is the long-term reality of living, untreated, with ME/CFS. Imagine living with an untreatable disease so terrible that you would choose suicide to escape it.

    750 written and over 30 in-person patient testimonies, including that of the AAC patient representative, conveyed how this devastating disease impacts our lives and the imperative of weighing the opportunity to benefit against the risk of no treatment to escape from this terrible physical burden and get back even a piece of our lives.
    For us, even small improvements have a very significant impact on our quality of life, which were dismissed by FDA statisticians. It’s evident that Ampligen has provided benefit to patients, with the testimony and data pointing to meaningful change in our ability to function and care for ourselves. 

    The true nature of this disease and the plight of patients have been ignored for too long. Patient testimony and patient and clinician experience provide evidence that this drug works in many patients. A number of AAC members agreed that Ampligen helps and other members noted that they saw an indication of effectiveness in some patients. 
    Let patients and their doctors decide whether the only treatment in FDA clinical trials for ME/CFS is the right medicine to provide relief from the living death that is our reality today. Remember that the disease itself has a collateral impact that creates its own serious risks for patients.

    The advisory committee voted that Ampligen’s safety profile is adequate for approval.
    Approve Ampligen by Feb 2, 2013. Anything less is condemning ME/CFS patients to years more of continued suffering without any hope of relief.

    Just Do it!

Source: occupy.com

    • #Ampligen
    • #online email campaign
    • #FDA
    • #CDC
    • #chronic fatigue syndrome
    • #Me
    • #myalgic encephalomyelitis
    • #EDS
    • #POTS
    • #Postural Orthostatic Tachycardia Syndrome
    • #post viral syndrome
    • #Epstein Barr Virus
    • #hhv6
    • #Virus
    • #chronic illness
    • #Chronic Immune Dysfunction syndrome
    • #Prohealth.com
  • 4 months ago
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Learn more about ME/CFS. This part 4 of a series 6 videos.

The title is: Crime of deception: HGRV epidemic the CDC call “CFS” 

Do you know what day May 12th is?

    • #CFS
    • #chronic fatigue syndrome
    • #ME
    • #myalgic encephalomyelitis
    • #Epstein Barr Virus
    • #epstein barr
    • #MS
    • #Lizzie Fall
    • #sarah whitestone
    • #CDC
  • 1 year ago
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Learn more about ME/CFS. This part 1 of a series 6 videos.

The title is: Crime of deception: HGRV epidemic the CDC call “CFS” 

Do you know what day May 12th is?

    • #chronic fatigue syndrome
    • #ME
    • #myalgic encephalomyelitis
    • #POTS
    • #Epstein Barr Virus
    • #epstein barr
    • #Lizzie Fall
    • #CDC
  • 1 year ago
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This is Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

I participated in this video for our UK friends. My name is Lizzie Fall, and I’m 17 and live in the Atlanta Metro Area in Georgia. This is my website: http://payitforwardforme.tumblr.com/ 

Source: CNN

    • #chronic pain
    • #chronic fatigue syndrome
    • #Chronic Immune Dysfunction syndrome
    • #Epstein Barr Virus
    • #POTS
    • #Lizzie Fall
    • #ME
    • #myalgic encephalomyelitis
    • #POTS
    • #Postural Orthostatic Tachycardia Syndrome
    • #post viral syndrome
    • #CDC
    • #NIH
    • #medicine
    • #medical
  • 1 year ago
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I just want everything to be normal again.

simplicityisbeauty:

I want this surgery for my hips to know if it will help with the pain.

I want my CFS to go away so I can live life again properly.

I want my Nan back to comfort me when I’m sick and to make me feel better.

I want some of my old friends back who left me in my moment of need.

I want someone to hug me and tell me it’s all going to be okay, that this bad stuff will eventually go away and everything will be better.

I just want everything to be normal again.

(via ive-got-war-in-my-mind-deactiva)

    • #cfs eds pots me myalgic encephalomyelitis cure nih cdc fashion change style politics USA Lizzie Fall Elizabeth Fall lace retro vintage ...
    • #CFS/ME Chronic Fatigue Syndrome
    • #Medicine
    • #cdc
    • #nih
    • #Med School
  • 1 year ago > ive-got-war-in-my-mind-deactiva
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Heal Kick

Hey everyone. Check out my friend’s Joey Tuan’s website. It’s called Heal Kick!

It’s for people with:

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Chronic Lyme Disease, Fibromyalgia, Rheumatoid Arthritis, Lupus, Sarcoidosis, Reflex Sympathetic Dystrophy, Multiple Sclerosis, Multiple Chemical Sensitivity, Mold-Related Illness

Giving a shout out to Joey Tuan ! Awesome website check it out.

Pay It Forward For ME! Join us in our pledge campaign.

    • #me
    • #medical
    • #medicine
    • #CFS/ME Chronic Fatigue Syndrome
    • #cfs eds pots me myalgic encephalomyelitis cure nih cdc fashion change style politics USA Lizzie Fall Elizabeth Fall lace retro vintage ...
    • #USA
    • #New York
    • #UK
    • #Europe
    • #Audi
    • #bmw
    • #Fiat
    • #Vw
    • #Spider
    • #masserati
    • #politics
    • #Family
    • #NIH
    • #CDC
  • 1 year ago
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Is anyone listening? National Institutes of Health only spends 6 dollars on research per person with ME/CFS!

National Institutes for Health spending per patient per disease.

HIV/AIDS $3059.00 per person   CANCER $5448.00 per person  ME/CFS  $6.00 per person

We have to be louder than ever before, we have to be noticed. We are the future remember?  

Pay It Forward For ME. Take the 10 pledge now to help us get to Washington to speak up for all of us young people. 

Please Reblog this if you care about getting better!

    • #Anxiety
    • #CDC
    • #CFS/ME
    • #CFS/ME Chronic Fatigue Syndrome
    • #Depression
    • #Donate
    • #EDS
    • #Fashion
    • #Health
    • #Love
    • #ME
    • #Medicine
    • #NIH
    • #POTS
    • #Philliphines
    • #Pots
    • #President
    • #UK
    • #VW
    • #WHO
    • #Washington D.C
    • #action
    • #advocacy
    • #america
    • #art
    • #audi
    • #bmw
    • #cars
    • #chronic fatigue syndrome
    • #cure
  • 1 year ago
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Twitter & YouTube Information& My Email

Twitter @PayitForward4ME

YouTube http://www.youtube.com/user/MyInvisibleIllness

Email LizzieFall@aol.com 

    • #CDC
    • #CFS
    • #CFS/ME
    • #Cars
    • #College
    • #Epstein Barr Virus
    • #Fall
    • #Georgia
    • #H6
    • #Immune dysfuction
    • #LA
    • #Lizzie
    • #ME
    • #Med school
    • #Medicine
    • #NIH
    • #NY
    • #Pay it forward
    • #Teenagers
    • #University
    • #art
    • #chronic fatigue syndrome
    • #classic
    • #cure news
    • #fashion
    • #fatigue
    • #immune system
    • #inflation
    • #love
    • #mono
  • 1 year ago
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Pay it Forward For ME

About

Who's your ME/CFS doctor?

We created this blog in order to help spread awareness of the debilitating illness Myalgic Encephalomyelitis -Chronic Fatigue Syndrome.

Pages

  • About Lizzie
  • You Tube Videos
  • Tell The Media To Do A Story
  • Make A Difference
  • Contact Senate Decision Makers
  • Contact House Decision Makers
  • CFSAC Testimony 11/11
  • Chronic Fatigue Syndrome Advisory Committee
  • CFSAC Committee Recommendations
  • Resources

Me, Elsewhere

  • @payit4ward4ME on Twitter
  • myinvisibleillness on Youtube

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