Senator Ed Markey introduces resolution to encourage immediate government response for ME/CFS

WASHINGTON D.C. – The Solve ME/CFS Initiative (SMCI) announced Tuesday that 102 people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and their loved ones rallied together in the largest Capitol Hill action for the disease to date. Advocates from across the country called for action and funding for ME/CFS research as part of the second annual ME/CFS Advocacy Day. Throughout the day the patients, caregivers, SMCI staff and board members met with 122 congressional offices.

SMCI Director of Advocacy and Communications Emily Taylor, Actress Amy Carlson, and SMCI President Carol Head​

Actress Amy Carlson (Blue Bloods) and Congressman Gus Bilirakis of Florida joined the event addressing participants during a Capitol Hill reception concluding the second annual ME/CFS Advocacy Day.

In conjunction with the event, Senator Ed Markey of Massachusetts introduced a tri-partisan Senate resolution (S. Res 508) to raise awareness and encourage more immediate government response for ME/CFS. The resolution is co-sponsored by Senator Angus King (I) of Maine, Senator Susan Collins (R), Senator Diane Feinstein (D) of California and Senator Chris Van Hollen (D) of Maryland and the result of a collaborative partnership between Solve ME/CFS Initiative, #MEAction and the Massachusetts CFIDS/ME & FM Association.

“ME/CFS has been in the shadows for too long,” said Senator Markey. “Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted.”

SMCI also announced that Congressman Paul Gosar (R) of Arizona and Congressman Dwight Evans (D) of Pennsylvania have submitted a request for a hearing on ME/CFS. The request calls for the Energy and Commerce Subcommittee on Health to hold a hearing to examine the ME/CFS clinical care crisis and review federal agency efforts to combat this urgent health crisis.

“Too many have already died. Too many are turning to suicide, feeling there is no way out of their nightmare. Too many suffer in silence with little hope. It’s time to change this,” stated Carol Head, President and CEO of the Solve ME/CFS Initiative and person with ME/CFS.

This second annual ME/CFS Advocacy Day follows over 300 global visibility actions on May 12, 2018, which is nationally observed as ME/CFS International Awareness Day, as part of the Millions Missing campaign sponsored by #MEAction.

 

Thank you Emily and Solve ME/CFS Initiative for the amazing work you do for our illness. Really think you are going about things the right way.

 

Thanks Emily and all the team, ye are super!!

 

S.Res.508 - A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.
https://www.congress.gov/bill/115th-congress/senate-resolution/508/text?format=txt

 

One can only hope this is more than just words. The new CDC training materials that should to be ready this fall will help with this.

My experiences interacting with my own health care provider are 1) that they have no interest in/see no need for training their doctors on ME/CFS, and 2) that physician training is done piecemeal at an individual clinic/hospital level, not rolled out uniformly across the organization.

Edit: Much has changed in a few months, and my provider is currently rewriting their ME/CFS clinical guidelines based on the new CDC Info for Healthcare Providers. Also, they are trying to figure out how to train their thousands of primary care doctors on this.

 

Don't forget about Sr 508. Please contact your Senator to co-sponsor this bill.

 

Thank you Emily, and SMCI! Wonderful work!

And, thank you @Webdog for your work with your health care provider, and all your other advocacy. For so long ME knowledge has been piecemeal. As you have indicated we need this rolled out on a grand scale to all health care practitioners. We need the major players on board for this.

Thanks again to Emily, and all at SMCI, and all who advocate!