Write to Sen. Gardner for SR 508

Hi Everyone! It’s time to show our senators that we still care about Senate Resolution 508 in support of our goals for finding a cure for ME. We’ve been doing phone calls so let’s change it up and send messages this week. Here are  instructions on how to send him a message on his website. Read through it first, put in your name and contact info and change the message for your situation.

Use this link  for the contact form for Senator Gardner:

Senate Resolution 508 – 1/10 of the way !

SIGNS  of PROGRESS!

 

Yesterday (June 27, 2018) two additional Senators signed on to cosponsor Senate Resolution 508 in support of ME research! Rob Portman, Republican of Ohio was no doubt encouraged by his colleague Sherrod Brown who signed on as a Cosponsor a few weeks ago. Also Cory Booker, Democrat of New Jersey, a great supporter of #pwme, has been added to the list.

That makes 10 total Cosponsors. Only 90 more to go!

Don’t you think that Colorado Senators Cory Gardner and Michael Bennet should be the next to sign on ?

Lobbying for S.R. 508*

On May 15th, 2018 we had a positive meeting with Mr. Kwan Atlas, Constituent Advocate in Senator Michael Bennet’s Denver office. We explained about the impact of ME on the tens of thousands of Coloradoans affected by this illness and asked that Senator Bennet support Senate Resolution 508* and hopefully encourage Senator Gardner to do so as well.

Hey, we are Congressional Lobbyists!

Here’s the MEActionCO team* in front of Senator Cory Gardner’s office building on May 29,2018. We had a positive meeting with his Regional Coordinator, Steven Emmen. We are encouraging Sen. Gardner to co-sponsor Senate Resolution 508 (SR508) to raise awareness of Myalgic Encephalomyelitis.

In summary, SR508 

• supports the goals of ME/CFS International Awareness Day and
• recognizes and affirms the commitment of the United States to discovering the cause of, and a cure for ME/CFS and
  improving the availability and quality of medical care for individuals with ME/CFS.

Fact Sheet for Meeting with Sen. Gardner May 29, 2018

Senator Cory Gardner R-CO

For our meetings with staffers from our Senator’s offices we prepared single page fact sheets to include the most important facts about ME in Colorado in a concise format. You may find these useful when you are explaining ME to friends, family or strangers.

• What is ME ?

  1. Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue syndrome (CFS) or ME/CFS, is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
  2. ME affects all ages and all races and is more prevalent in women.
  3. ME has no known cause, no diagnostic tests, no FDA approved treatments and is minimally funded by the NIH.
  4. Because it is a part of the curriculum in only a third of medical schools in the country, there are very few doctors who know the disease. Symptoms are often dismissed as it is difficult to diagnose.
  5. Patients wait years to get a diagnosis. Even then, medical care for the symptoms is hard to get as treatment options are limited.

• Prevalence

  2. About 13 million people worldwide live with ME, Between about 1 and 2.5 million are Americans. In Colorado, ME affects between 16 and 42 thousand.[1]

• Impact

  1. About 75% of people with ME are unable to go to work or school. About 25% are homebound or bedbound due to severe symptoms.
  2. The economic burden in Colorado is estimated to be between $286 and $404 million.[2]

• Goals of MEAction Global Network and MEAction Colorado

  1. Raise awareness of this little understood disease.
  2. Work for funding for research to find diagnostic test, treatment and a cure.

• Research Funding

  1. The NIH spends $14 million per year. For comparison, MS is funded at $115 million and is half as common and has less effect on quality of life.[3]
  2. ROI for ME research is estimate at greater than 100%.
  3. ME patients present with symptoms identical to those of Gulf War Syndrome.[4] Research for ME would benefit Gulf War veterans as well.

• Senate Resolution 508

  1. The resolution is being carried by Sen. Ed Markey D-MA. It was introduced on May 15^th and referred to the Committee on Health, Education, Labor, and Pensions.
  2. We are working to add more cosponsors to the resolution.
  3. Because of his prominence in the Senate, Senator Gardner’s support would go a long way in helping to raise awareness of ME, an important first step in improving responsiveness of the medical community and a sense of urgency at the NIH. We are here to ask Senator Gardner to cosponsor this resolution.

 

[1] Estimated from CDC figures: https://www.cdc.gov/me-cfs/index.html

[2] Colorado burden of $286,482,139 to $404,445,084, estimated from NIH figures: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[3] https://report.nih.gov/categorical_spending.aspx

[4] Dr. Nancy Klimas, Director, Institute for Neuro Immune Medicine, Nova Southeastern University,CFSknowledgecenter.com

 

Here’s a printable PDF copy;

Gardner Fact sheet 

 

Photos of our May 12th #MillionsMissing Visibility Action

There will be more and possibly better photos to come, but I couldn’t wait to share this photo link with you. It was a drizzly, windy, and then brilliantly sunny Saturday morning, typical of springtime in the Rockies.  A warm and supportive crowd of over 60 Chronic Illness Warriors, friends, families and allies graced the steps of the Colorado State Capitol in Denver.

Were you there? What were your impressions?