May 2020


Welcome to our #MEAction Colorado newsletter.  We hope you find some valuable information in these newsletters.  If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Sincerely,

Lara Heisler, Editor   [email protected]
Jim Lutey, Editor       [email protected] 
 

Stories of Three of the Participants in Solve's ME Advocacy Day
 
Kris
Advocacy Day! Never having done anything like this before, I was more than a bit concerned.  The combination of pea soup level brain fog, and the energy of a sleeping snail had sabotaged more than a few planned things of late.  However, the training, a few days before, was invaluable!  The scripts were well thought out, highlighted the important points, and there was even a print-out, fill-in-the-blanks one-page script so we could have it right in front of us.  After a small technical glitch, where our contact couldn't call in, the call went really well.  Lindsay, our leader, was organized, rehearsed, right on point, and led off with a member's story of dealing with ME, which was quite powerful.  Katie Wallace, of Representative Joe Neguse's office, listened, asked insightful questions, and assured us of their help however they are able.  The rebound from spending all those mental spoons hit later, however I will definitely do it again!

 
 
   
 
Lindsay with her Nakia taking notes after her calls.  For the record, Nakia was not helping take notes. 
 
My name is Lindsay & I am a person with ME/CFS living in Evergreen, Colorado.  Prior to this year's Solve ME Advocacy activities, I have never been involved in Advocacy work, primarily because I felt reluctant to commit to it in case I might need to cancel due to lack of energy or brain power.  This year, I attended a 2-hour training Webinar & three 15-minute phone conferences with Congressional staff.  I did everything from my bed & took breaks/rests as needed.  All of the training materials were recorded & could be viewed at your own pace.  On most of my conferences, there were experienced advocates to help guide us. I like that there were activities for patients with limited physical resources, like creating social media posts or making phone calls from bed.  I am glad I got involved & look forward to helping on future work. 


Elke at her ME Advocacy home office

My name is Elke and I have been sick with ME/CFS since 2006.
 
I volunteered to participate in ME Advocacy Day on April 21st--the first virtual conference of it's kind, as COVID-19 has crippled a nation.  The timing of COVID-19 and the subsequent "disabling" of the world in relation to ME/CFS advocacy resonates deeply with the ME community as so many of us developed ME/CFS after a viral illness and have been living the "stay at home/economic crippling/limited life" as our normal day to day.       
 
Solve ME/CFS, like many of us, realize not only the devastation of the acute illness, but are also keenly aware of the inevitable cases of ME/CFS to come.  So, the focus of the week shifted to funding for post viral illness as a way to get ahead of these post viral ME/CFS cases in an effort to better understand how this illness works so we can educate providers and target tests and treatment.  I had the honor of joining calls with Reps. Ken Buck's and Doug Lamborn's aides and was able to share my story.  Both eagerly listened to what I had to say, expressed dismay and concern over my struggles and lack of care, and vowed to pass on the relevant information to these representatives.  Follow up emails to both aides were also well received.
 
What surprised me more than anything was the feeling of accomplishment, empowerment and pride I felt by pushing past my insecurities of discussing my health and being vulnerable to skepticism and scrutiny (you guys know).  I received neither from these aides.  It is an experience I hope to continue to participate in going forward.  We all have a voice, and together we have the collective power to make a difference.



Solve ME/CFS Initiative
In light of the COVID-19 epidemic
 
Please stay tuned to social media and the previous link for activities in coming days and throughout next week.


#MillionsMissing 2020 

 
Click HERE to read more about Virtual #MillionsMissing 2020.  The #MillionsMissing activities go from  
May 10-14, 2020.   #MillionsMissing 2020 will be a week of Action!  Take a look at the full schedule, and of course, only do what you can.  No individual can do it all, but it's our collective action that matters.  
 
 


Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
  
 
 #MEAction Colorado
 
Disclaimer:  
 
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.