May 23 - U.S. Senate passes resolution supporting ME/CFS - House Res. in the works (MEAction)

[Mary]

https://www.meaction.net/2019/05/24...351747933&mc_cid=e5af5a0c19&mc_eid=8839aae380

 

[Jackb23]

Is this just another ruse to try and distract us? Or does it entail direct action.

 

[Mary]

Is this just another ruse to try and distract us? Or does it entail direct action.

Did you read the link? I think any power or effect the resolution may have will be dependent on a lot of hard work by us. From what I read, getting the resolution passed was due to a lot of hard work by people at MEAction and SMCI. The linked notice states in part:

In sum, having Congress formally acknowledge the ME crisis and the need for more action raises the profile of our disease and is an important first step towards our real goal – legislation. Moreover, we gained new allies. Passing ME legislation will be a long process, but symbolic actions like this help add to the foundation of support we are building within Congress

 

[andyguitar]

I think it's very good news. Over here in the UK there was a debate in our Parliament about ME. It showed that about 20 or so well respected and experienced MPs had a pretty good grasp of the issues surrounding ME and would offer their full support to more funding for research and a better deal all round for sufferers. This has never happened before. It put ME on the political map. It was also a real boost to those who have it and their relatives/friends. Things are headed in the right direction.

 

[Emily Taylor]

U.S. SENATE PASSES ME/CFS RESOLUTION WHILE HOUSE INTRODUCES MATCHING ACTIONMAY 24, 2019
The Senate Resolution (S. Res 225) in support of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day is now the official stance of the U.S. Senate and the U.S. House introduced a matching resolution (H. Res 399) this week.

On May 23, 2019, the U.S. Senate passed a resolution “Supporting the Goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.” The Bi-partisan resolution was led by Senator Ed Markey of Massachusetts and the matching resolution introduced the same week in the U.S. House of Representatives was led by Representative Zoe Lofgren of California.

This victory was one of the targets of ME/CFS Advocacy week (April 1 – April 7,2019), a Solve M.E. nationwide effort to raise awareness, advocate for increased federal funding, and tell the stories of people with ME/CFS.

Our 3rd Annual ME/CFS Advocacy Day in Washington DC, in partnership with #MEAction, drew over 240 registered ME/CFS advocates to attend 185 meetings (23 of them member-level!) with members of Congress and their staff.

Thanks to the combined efforts of our community, the US Senate has taken a stand for ME/CFS! This action was a joint partnership between Solve M.E., #MEAction, and the Massachusetts ME/CFS&FM Association.

The two Resolutions were co-sponsored by the following Members of Congress:

Senator Ed Markey (D-MA)

Senator Susan Collins (R-ME)
Senator Chris Coons (D-DE)
Senator Kevin Cramer (R-ND)
Senator Richard Blumenthal (D-CT)
Senator John Hoeven (R-ND)

Representative Zoe Lofgren (D-CA-19)
Representative Jack Bergman (R-MI-01)
Representative Debbie Wasserman Shultz (D-FL-23)
Representative Dave Joyce (R-OH-14)

Below is the full text of the resolution which passed in the U.S. Senate and was introduced in the U.S. House of Representatives:

Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.
Whereas the National Academy of Medicine (referred to in this preamble as “NAM”), formerly known as the Institute of Medicine, has found Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (referred to in this preamble as “ME/CFS”) to be “a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients”;
Whereas between 836,000 and 2,500,000 individuals of all ages, races, and sexes in the United States are believed to be afflicted with ME/CFS, with millions more afflicted by ME/CFS worldwide, and the vast majority of individuals with ME/CFS are undiagnosed or misdiagnosed;
Whereas ME/CFS is approximately 4 times more prevalent in women than in men;
Whereas ME/CFS is a chronic disease with no known cure and leaves \1/4\ of individuals with ME/CFS housebound or bedbound for extended periods of time;
Whereas 50 to 75 percent of individuals with ME/CFS cannot work or attend school;
Whereas medical expenses and lost productivity related to ME/CFS cost the economy of the United States an estimated $17,000,000,000 to $24,000,000,000 annually;
Whereas the cause of ME/CFS is unknown, there is no diagnostic test for ME/CFS, and there is no treatment for ME/CFS that is approved by the Food and Drug Administration;
Whereas NAM has noted a “paucity of research” on ME/CFS and that “more research is essential”;
Whereas the Centers for Disease Control and Prevention has called ME/CFS “America’s Hidden Health Crisis”;
Whereas individuals with ME/CFS struggle to find doctors to care for them, and ME/CFS is included in less than \1/3\ of medical school curricula;
Whereas, in recognition of the dearth of research on ME/CFS and the profound impact that the disease has on individuals with ME/CFS and their loved ones and caretakers, the National Institutes of Health (referred to in this preamble as the “NIH”) is “committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition”;
Whereas, in 2017, 11 Institutes at the NIH and the Office of the Director of the NIH contributed more than $7,000,000 in grants to assist in establishing Collaborative Research Centers and a Data Management Coordinating Center to improve the coordination of ME/CFS research and help accelerate understanding of ME/CFS; and
Whereas, in 2019, May 12 is recognized as International ME/CFS Awareness Day: Now, therefore, be it

Resolved, That the Senate/House of Representatives—

(1) supports the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day;
(2) recognizes and affirms the commitment of the United States to—

(A) supporting research and medical education for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and
(B) promoting awareness among health professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and

(3) recognizes the continued importance of—

(A) health care professionals and medical researchers who care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; and
(B) those who work to discover the cause of, and develop and improve diagnosis of, treatments for, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.



Press Release from the office of Senator Markey.
Senators Markey and Collins Applaud Passage of International ME/CFS Awareness Day Resolution

Bipartisan resolution recognizes the continued importance of medical research, education, and awareness for ME/CFS

Washington (May 24, 2019) – Senators Edward J. Markey (D-Mass.) and Susan Collins (R-Maine) today commended passage of a U.S. Senate Resolution recognizing May 12, 2019 as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, complex, and systematic disease that limits the daily activities of up to 2.5 million Americans. Most ME/CFS patients experience fatigue that may not improve with rest, leaving many patients confined to bed and unable to participate in the community. Despite the Centers for Disease Control and Prevention calling ME/CFS “America’s hidden health crisis,” there is a lack of research on ME/CFS and the significant impact it has on affected individuals and their loved ones. The Senators’ resolution recognizes a national commitment to supporting medical research, education, and awareness for ME/CFS and acknowledges the continued importance of collaboration between federal agencies, clinicians, and patients in developing diagnostics and treatments for ME/CFS.

“This resolution is a ray of light on a disease that has been in the shadows for far too long,” said Senator Markey. “Today the Senate sent a clear message to those affected by ME/CFS, and their loved ones, that we will continue to support medical research, education, and awareness on this debilitating condition. Though our work is not done, this is a critical step toward improving the lives of millions of Americans affected by ME/CFS.”

“This bipartisan resolution reaffirms our commitment to improving the lives of individuals living with ME/CFS, an under-diagnosed disease that affects 2.5 million Americans, predominantly women,” said Senator Collins. “I am pleased to join my colleagues in spreading awareness for this truly debilitating condition as we strive to bring hope to individuals struggling with ME/CFS and their families.”

This resolution is co-sponsored by Senators Chris Coons (D-Conn.), Kevin Cramer (R- N.D.), Richard Blumenthal (D-Conn.), John Hoeven (R-N.D.), Chris Van Hollen (D-Md.), Cory Booker (D-N.J.), Dianne Feinstein (D-Calif.), Angus S. King Jr. (I-Maine), Kyrsten Sinema (D-Ariz.), Kamala Harris (D-Calif.), Debbie Stabenow (D-Mich.), and Robert Casey Jr. (D-Penn.).

A copy of the resolution can be found HERE.

https://solvecfs.org/u-s-senate-passes-me-cfs-resolution-while-house-introduces-matching-action/

 

[SlamDancin]

So an awareness day and that’s all?

 

[Emily Taylor]

So an awareness day and that’s all?

First acknowledgement action on a long road to inclusion and targeted legislative response.
The first step to solving any problem is admitting there is one. This Resolution is the Senate's version of acknowledging the problem.