NJCFSA

NJ Governor Christie declares May 2012 as Chronic Fatigue Syndrome Awareness Month

Pat LaRosa — Tue, 01 May 2012 22:53:42 +0000

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Pat LaRosa — Fri, 27 Apr 2012 02:06:32 +0000

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Call for Action

Pat LaRosa — Fri, 27 Apr 2012 02:01:57 +0000

=============== Call For Action ===============

To: All ME/CFS Patients, Loved Ones and Patient Groups April 23, 2012

From: New Jersey Chronic Fatigue Syndrome Association

Subject: Request FDA Stakeholder Meeting for ME/CFS

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 1 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!

For a Template for the letter along with Email addresses and other details Click Here.

Thank you for taking part in your recovery!