UNREST in Denver March 2nd

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!

Representing ME at the Womxn’s March

Kristen Aguirre from 9News Denver did a very nice segment on MEAction Colorado’s planned participation in the Womxn’s March providing some visibility that is greatly appreciated by those whose lives are so badly impacted by this ‘invisible disability’.

Group photo courtesy Tom Strobel

Our small but mighty team grew a little bigger with the addition of some last minute volunteers who braved the below freezing weather and helped represent those fighting ME who can’t physically make it through the march.

Ready to March

Got some visibility for MEAction Colorado ahead of the March.

 

Pictures and story to follow.

MEAction at Denver’s Womxn’s March

UPDATE: Jan 15,2019 – Here is the updated map for the Womxn’s March showing our meeting place and the shorter, alternate ADA route that we will be following.

 

Raise ME awareness in a big way at the 3rd annual Women’s (Womxn’s) March!

We invite anyone with ME who is willing and able, to meet and walk the shorter ADA route, along with our healthy allies, friends and families who can push wheelchairs to represent the #pwME that we love who are too ill to participate.

Our First Year!

In 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.

FRIDAY – Virtual Protest Day !

Time 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:

5. 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

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.

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 !

Dear Friends,

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The MEAction Global Network needs your help!

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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

Take a Tour of our Website

Take a look  at the changes we’re making on the MEActionCO website!

How many times have you been trying to explain to people what ME is and what we’re doing here at MEAction Colorado? Well the website can be your virtual handout.

The Home page now has a quick introduction about ME and the ME community in Colorado. There’s a little longer explanation about ME on the next tab, What is ME.

Read the latest  posts on the Blog tab. While you’re there, sign up to get updates delivered to your email box. And check out the feeds from our Twitter and Instagram accounts.

Jennie’s NIH$$ Fact check

What’s a million dollars between friends?

Jennie Spotila is a fantastic resource about everything going on in the ME community. She digs through the details and tells it like it is. Here’s her analysis of how much the NIH is REALLY spending on ME research.

And it’s not what you think!

UPDATE:

No sooner than I got this posted, Jennie followed up with her projection for FY 2018.