Built on Hope - Strong in Advocacy - Finding a Cure Through Research

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Advocacy for ME/CFS Chronic Fatigue Syndrome

Unrest  tells the first-person story of Jennifer and her husband, Omar, newlyweds grappling with how to live in the face of a lifelong illness. But it is also a global story about an international community of patients with a serious, life-altering illness — millions suffering invisibly and left at the margins of medicine and science.


You can watch the entire documentary on Netflix.

Advocacy

Michigan Proclamation

Great Advocacy for our Michigan team. Governor Rick Snyder signed a proclamation declaring May 12, 2018 to be Myalgic Encephalomyelitis,/ Chronic Fatigue Syndrome (ME/CFS) Awareness Day. 


It Reads:


WHEREAS, Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severe neuroimmune disease characterized by overwhelming exhaustion, cognitive problems, pain, post-exertional relapse, immune disorders, headaches, cardiac symptoms, dizziness and balance problems, and that leaves many ME patients homebound or bedridden for years at a time and as many as 75% unable to work; and


WHEREAS, because of stigma and lack of attention by the government and the research and medical communities, patients struggle to access appropriate medical care and rarely recover due to a lack of treatments, resulting in loss of hope and thus higher rates of suicide; and


WHEREAS, ME afflicts 836,000 to 2.5 million Americans, more than 30 thousand in Michigan, and 17 million worldwide, at an annual cost to our country of $18-24 billion dollars per year in lost productivity and medical costs; and


WHEREAS, awareness of ME should lead to increased funding for research by the federal government and private entities and result in better medical care with more accurate diagnosis and appropriate treatments:


NOW, THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim March 12 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day in Michigan. 


May 12th Day of Action in Michigan

#MillionsMissing is a global campaign for ME health equality. On May 12th, 2018, we gathered at the Clinton-Macomb Library for a free community screening of the documentary Unrest, Panel Discussion and Visibility Action. 


We video taped comments to NIH Director, Dr. Francis Collins to tell him we need more funding and a cure!


We are the #MillionsMissing, and we will take a stand together and be seen!

Meeting with the Senator

On May 2, 2018, several people from Michigan meet with Senator, Debbie Stabenow's office to discuss how she can help advance ME/CFS funding and medical education. Amanda, her local medical staffer, is going to facilitate introductions to people at the State's Department of Health, and with other key people in the medical community. 

She is also going to introduce us to people on the Health Policy Committee so we can re-word Resolution 0372 and get it on the House Floor for a vote.