Patient Advocacy for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis

Patient-Advocacy-for-ME-CFS

Advocacy plays an important role in any illness, but for illnesses that are not well accepted in the medical community, advocates are crucial.

Advocates are responsible for lobbying representatives to help increase research funding. They sponsor conferences, which allow researchers to share their findings and provide an avenue for physicians to stay up to date on the latest developments.

Advocates organize fund-raising campaigns for research, and increase public awareness of the illness and how it affects patients. They initiate petition drives, start support groups, and post commentary on their blogs about events that directly affect the welfare of patients.

On a personal level, advocates are responsible for making sure ill children and their families are protected, and their civil rights upheld.

Many people are too ill to do advocacy work, but anyone can participate by signing a petition, or sending an email, or by a posting a tweet when events that affect our community arise.

The cumulative effect of advocacy efforts, from organizing major fund-raising drives to simply signing a petition, is that all of our lives are made easier.

 

Advocacy Sites for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis:

 

ME Advocacy
http://www.meadvocacy.orgOccupy CFS
http://www.occupycfs.com
Thoughts About ME
http://thoughtsaboutme.comOnward Through the Fog
http://cfstreatment.blogspot.com

 

Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Advocacy News:

 

CALL TO ACTION: Tell Ampligen Maker To Put ME Patients First!
A petition urges Hemispherx to restore the prior price of Ampligen, and retain the critical compassionate care patients.
Jen Brea’s Outrageously Successful Chronic Fatigue Syndrome (ME) TED Talk
Jen Brea’s talk has gotten 160,000 views in just three days. This is how one person can make a difference.

 

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