Advocacy Action: Urge Your Senator to Support ME/CFS Resolution

[Emily Taylor]

Your Advocacy in Action: Our ME/CFS Senate Resolution is Moving!
Thanks to your efforts during ME/CFS Advocacy Week, Senators Markey and Collins will be introducing our resolution recognizing International ME/CFS Awareness Day. This is the last chance to urge your Senator to be a part of this historic moment.

It’s time for the US Senate to recognize ME/CFS! Use the form below to ask your Senator to become a co-sponsor of our resolution.
The deadline for co-sponsorship is 5:00pm ET on Tuesday May 7th!
Use our 2-minute action form to contact your Senators TODAY and ask them to sign-on to these efforts.



https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00062

 

[Sly Saint]

Local Man Testifies To Senate Panel About ME/CFS

May 10, 2019

A local resident testified Thursday in Lansing in support of a resolution trying to being public awareness to a disease that could affect more than two million Americans.

The National Academy of Medicine says Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, is "a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients," leaving many home or bedbound. It’s believed as many as 2.5 million Americans suffer from the disease, more than 41,500 of them Michigan residents. Among them is Brian Shuell of Brighton Township. After being unable to work for several years as a result of ME/CFS, he has since become an advocate fighting for awareness of the disease, which he says is severely underfunded.

On Thursday, Shuell testified in front of the Senate Health Policy and Human Services committee. State Senator Lana Theis of Brighton Township introduced a resolution (posted below) on his behalf and testified alongside him to the committee, of which she is a member. The resolution recognizes ME/CFS as a, “tragic, disabling disease that destroys the lives of many patients and takes a severe toll on their families, friends, and caretakers” while affirming the state’s commitment to improving the availability and quality of medical and supportive care for ME/CFS patients. It also recommends that the National Institutes of Health increase funding of ME/CFS research while encouraging universities in Michigan to focus research attention on the disease. On the federal level, Congresswoman Elissa Slotkin also signed on to two letters of support for funding increases.

full article here
https://www.whmi.com/news/article/local-man-testifies-to-senate-panel-about-me-cfs