Colorado Members of Congress send letter to HHS

Colo letter 2019 on 1 page 300pxWe are thrilled to share this Letter to the HHS that Sen. Bennet, and Reps. DeGette, Perlmutter, Neguse and Crow sent to the HHS regarding the CFSAC (CFS Advisory Committee). The letter demands answers after the committee was disbanded.  Please see below for how to thank them on social media.

Last year, over 40 members of Congress including 2 from Colorado, signed a letter to the HHS.  Not content to just do that, the staff of Sen. Bennet worked with us to craft a Colorado-specific letter which was signed by 11 of us from MEAction CO plus Diane Bean from the Solve ME/CFS Initiative Board of Directors.  Sen. Bennet’s office added a cover letter and contacted all Colorado Members of Congress to come up with support from 5 of them.

 

This comes as a direct result of your support for our advocacy.  All your emails and calls truly made a difference in catching Congressional attention in a big way.

We accomplished more than just 5 more voices in support:  now every single CO Member of Congress is aware of our concerns!

Regardless of what happens with HHS and the CFSAC, when there is legislation introduced before Congress, we can count on strong support from most of our delegation, and awareness from them all.

We are deeply grateful to the four representatives who signed and especially to Sen. Bennet and his health staff for their extreme dedication and for going the extra mile for us.

Please thank our congressional supporters on Social Media.  Personalize or use a minimal text for the Reps: “Thank you for supporting people with ME/CFS by signing the letter to HHS regarding the CFSAC.”  And for Sen. Bennet: “Thank you for supporting people with ME/CFS by writing a cover letter to the HHS regarding the CFSAC and by contacting the rest of Colorado’s Members of Congress.  I deeply appreciate your support.”

dems who signed letter 500 x210Here are their contacts on Facebook and Twitter:
facebook.com/senbennetco/
facebook.com/degette/
facebook.com/RepJoeNeguse/
facebook.com/RepPerlmutter/
facebook.com/RepJasonCrow/

@SenatorBennet
@RepDianaDeGette
@RepJoeNeguse
@RepPerlmutter
@RepJasonCrow

 

UNREST in Denver March 2nd

unrest film poster (7) 300x300

Update  as/of 1:25 pm Thursday March 1:

Unrest is still on for tomorrow but stay tuned for any last minute weather updates.

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MEAction of Colorado is proud to present a screening of Unrest, a Sundance award-winning film by Jennifer Brea, with a panel discussion. Invite your friends, family, and doctors to join us!

The event will be held at 1:30 pm on March 2,2019 at the Co-Op at 1st at 5045 W 1st Ave, Denver, CO 80219-1005. Doors open at 1:00. Refreshments will be served after. Come early to check out the indoor farmer’s market!

Medical providers can earn CME credits. Click here for details.

Donations to cover the cost of the event and to support the work of MEAction may be made online at our GoFundMe page or in cash at the event.

RSVP at MEAction or on Facebook.

Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients fully housebound or bedbound. At least 75% cannot work or go to school even part time. An estimated 15-30 million people around the world are suffering from ME.

View the trailer here.

Our First Year!

our first year 2018 300x meacIn February 2018, MEActionCO started as a FaceBook group with a handful of members. With guidance from MEAction’s national team, we managed to organize and plan for the first Millions Missing event in Denver. As the group grew slowly to about 35 members we pulled together to organize the event.

May 12th – We pulled it off. It was a drizzly cool day at the state Capitol when we got together for the first time for a morning of speakers and live music and mutual support.  We scored a little media coverage with stories about Pam and Nora.

We had barely caught our breath from the Missing Millions event when the word came from the MEAction Global network that Sen Ed Markey of Massachusetts had introduced Senate Resolution 508: A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.

We got to work and donned our red T-shirts again to meet with a staffers at the offices of our Senators, Cory Gardner and  Michael Bennet.

While we continued to push for sponsorship from our senators for SR 508, the US Department of Health and Human Services (HHS) threw a monkey wrench into the works. HHS had sponsored the CFS Advisory Council (CFSAC). Since its inception CFSAC’s charter had been automatically renewed every two years as its charter expired. But in September, without notice, HHS decided not to renew. Even the members of the Council were not informed.

We immediately renewed our discussions with our senators’ staffers.  As a direct result of our efforts, Sen. Bennet’s office joined Sen. Markey’s and others to contact the HHS on our behalf to demand answers.

MEAction’s National Congressional working group, with a coalition of other ME advocacy groups, drafted a letter to the HHS demanding an explanation and a plan to continue the work left unfinished when CFSAC was abruptly terminated.

MEActionCO members have been meeting in person and via phone calls with staffers from the offices of both Senators and 5 of our US representatives to ask for their support and signatures on the HHS CFSAC letter.  (Look for an update here on that campaign very soon).

While getting a baptism by fire in the workings of congressional lobbying, other actions were being initiated by MEActionCO members:

  • In July Holly Heiman volunteered to start the Doctor list. She collated feedback from members’ experiences with Colorado doctors who seem knowledgeable or willing to learn. The list is available to MEActionCO Facebook members.
  • On August Jim Lutey, husband and caregiver of his wife Pam, organized a presentation for the Greeley After Hours Rotary Club to raise awareness and understanding about ME. Jim is willing to share his slides with anyone else who would like to present to a group.

As we approach the end of the year our member list has grown to 120. Our To-Do list has grown as well. We commend all the efforts of our members in 2018 and invite everyone to participate according to their abilities and interests. There are lots of opportunities and we are all in this together.

 

House of Representatives Actions

Julie_and_John

Julie and John at office of US Rep Ken Buck

Recently we had meetings in the Colorado offices for Democratic Rep. DeGette and Republican Rep. Buck to discuss the situation with the disbanded CFSAC (Chronic Fatigue Syndrome Advisory Committee) and to start educating our Representatives’ offices about ME so that they will more readily ally with us on current and future requests.

We were there for these reasons:

  • To educate them on ME and why it is important to support our cause
  • To ask them to join forces with other Reps. who are in discussions with the HHS (Health & Human Services) on our behalf to find out why they got rid of the CFSAC
  • To ask them to send this letter to a health committee asking for investigation into the ME/CFS health epidemic
  • To be willing to support us with future ME legislation when it is introduced.
  • Since DeGette is on that health committee, we asked her to use her role there to make sure that ME gets proper consideration and floor time.

As always, the people we talk to were friendly, willing to learn.  Neither had heard of ME before, which highlights how critical the education and awareness component of these visits are.  The people we met with were (as always) non-committal and agreed to discuss things with their colleagues in DC.  I am cautiously optimistic that we’ll have support to one degree or another.  We will be following up with them and see what if anything we need to do to push it forward with them.

Dan_and_John

Dan and John at office of US Rep Diana DeGette

We’ve taken care of visiting Reps. DeGette and Buck and have people in charge of Joe Neguse (running to replace Rep. Polis) and Rep. Perlmutter.  We need someone to help with the other three districts.  It is much easier than it seems and the volunteers from the other districts who have been through it can help you every step of the way.  Please email john.kelty@meaction.net if you want to help, or contact me on FB or by PM.  Everyone who has visited a Congress office has felt heard, validated and seen in a powerful way.

You can enter your zip code  here to find your congressional representative. People with ME, loved ones, friends and allies are all welcome to help.  The only qualification is that you should be in the district of the Representative you are helping to contact.

Note–I know that the name “CFS” is a hot button for many people and that some prefer names other than ME, but in talking with congress offices, we match the names that the members of Congress would be familiar with, thus the names CFSAC and ME/CFS.

FRIDAY – Virtual Protest Day !

Terry-HHS-Protest-1-1-330x183Time to get out your #MissingMillions T-shirts and poster boards!

In case you haven’t heard, last week without warning or explanation, the Feds terminated the Federal Advisory Committee on Chronic Fatigue Syndrome (CFSAC).  Later the DHHS asserted that ME/CFS has been so embraced by the federal government that an advisory committee was no longer needed!

In response to this outrage, MEAction is organizing a day of protest this Friday, September 10,2018. If you are going to be in DC you can join the protest in person at HHS Headquarters in Washington, DC! Wouldn’t that be terrific!

Since most of us will not be able to do that, here’s the plan presented by #MEAction National;

Show up virtually on September 14th!

  1. Take a photo of yourself within the theme of “We will be Heard.
    Suggestions:Stare defiantly into the camera and hold up a sign that says, “Hear ME Now HHS;” or “We will be heard;” or “We will not be silenced.

    Write such words on your body.

    Cover your mouth with a bandana and write, “Do not silence M.E.” or “HHS will hear ME.” –  If you have another photo idea, we love it! What is the message that you want to send to the HHS? Use the hashtag and get the word out!

  2. Post your photo to social media with the hashtag #HearMEnowHHS.  Tag the HHS director using the twitter handle: @SecAzar
  3. Call and email HHS Secretary, Azar.  Watch this space! We will provide you call and email details soon.
  4. Send your friends to D.C.  Encourage all friends and allies in the DC area to protest on your behalf!

Let’s take this a step further:

  1. Wherever you are in Colorado, there are other MEAction Colorado members nearby. If you are feeling strong enough to do so, reach out them and plan a little group photo shoot. You can do this ahead of time and post your pictures on Friday.

You can find friends in your area on our Facebook group or Contact us here and we’ll do our best to help.

If you are not on social media or need help posting, email your pictures to MEActionCO@gmail.com and we will post them for you.

Click here for more information about the CFSAC or here for all the details about the MEACTION protest.

 

 

1st Outreach Presentation in Colorado

ME Rotary Program #2 200x300

Jim Lutey explains Myalgic Encephalomyelitis

One of the big goals of MEAction is to raise visibility for People with ME (#pwME). Last Tuesday, August 28, one of our Northern Colorado members, did just that. Jim Lutey’s presentation ‘What about ME’ for the Greeley After Hours Rotary Club, was the first such presentation by a member of MEAction Colorado. Jim talked about the disease symptoms and its impact on people’s lives. He told how ME has disabled his wife Pam who became ill 2 years ago. Pam was a member of the Rotary Club but is now too ill to attend meetings.

Jim stressed the need for research funding, medical education, standard diagnostic guidelines and coordination among the groups who are working to raise awareness for this dreadful disease. I had the privilege of attending and adding comments to the discussion. We covered the MEAction organization here in Colorado, and the national and global organizations.

Jim’s presentation was well received. The club members were attentive and asked thoughtful questions. One gentleman raised the issue of disability insurance and we discussed the problems that many #pwME face in trying to get approved for disability when it is so difficult to get diagnosed.

ME Rotary Program #1 Jim and Diane 200x300

Greeley After Hours Rotary welcomes Jim and Diane

Members of the club expressed appreciation for the presentation and said they had learned a lot. They were interested in how they could help. They are hopeful that Rotary International will be open to supporting MEAction.

While Jim plans to give a few more presentations on ME for Rotary groups in the Greeley/ Loveland area, he can’t be everywhere. He will make his PowerPoint available for anyone who wants to give a similar talk. If you have contacts with Rotary clubs or other service or community organizations that would be interested, please let us know. If you would like to give a talk, let us know what info you require.

We need to educate Colorado. You can help.

 

– Diane for MEAction Colorado

 

 

URGENT Petition – Please Sign !

meaction logoDear Friends,

The MEAction Global Network needs your help!

Sign this #MEAction petition and stop the CDC from making ME treatment guidelines without our input!

The US Centers for Disease Control (CDC) is updating its ME treatment guidelines. As part of this work, it is attempting to quietly hire the same independent contractor that previously recommended graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME.

We cannot let history repeat itself: Sign the #MEAction petition to stop the CDC from repeating a terrible mistake. Then SHARE on social media and with friends and loved ones. We must act quickly and respond by Friday, Aug. 31st. That’s this Friday!

​​We encourage allies around the world to fight this contract by signing the petition, no matter where you live.

SIGN THE PETITION HERE

Back to Sen.Bennet

Meet with Kwon 201808xx 300x300Erin and Lee-Anne Du Plooy and I met with Kwon Atlas  from Senator Bennet’s office last Tuesday, Aug 7. to discuss SR508.  We understood that Sen. Bennet objected to co-sponsoring SR 508 because it is a single-disease issue.

MEAction had prepared some great information for us to counteract this.  Detailed charts explaining mathematically how ME is the most underfunded of all diseases in the NIH portfolio compared to disease burden, and how the Senate has recently singled out Lyme Disease for attention , provided examples from longer ago, like AIDS, where patient activism called Congress to act.

Also, both our senators supported legislation for people suffering from rare diseases.  Since ME is so very common, I was a bit disappointed to have to be at this point with both our senators, but we presented the best case, along with Lee-Anne’s personal story to keep a face and name in front of all the statistics.

We’ll be following up soon with Bennet’s office and will probably have a calling/email push along with that.  A similar meeting with our contact in Gardner’s office is in the works.

Write to Sen. Gardner for SR 508

contact gardnerHi 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: Continue reading