December 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   heisler.lara@gmail.com
Jim Lutey, Editor       jimlutey@gmail.com 
 
 
Colorado Emergency Fund
by John Kelty, Chair, MEAction Colorado
 
Last month #MEAction and the Colorado #MEAction chapter launched a historic pilot program in Colorado, an emergency fund for people with ME experiencing financial hardship.  You can find out more about it HERE.  The short application process is available HERE and you can also email co.emergencyfund@meaction.net with any questions.  Your application and emails will be fully confidential outside the very small application review team.   

The idea for this fund came from Colorado chapter's steering committee meeting about a year ago.  There were so many stories of people who have basic needs they could not meet because of this terrible disease, and the lack of an adequate and accessible government support system.  Many ME groups help in remarkable and wonderful ways, such as the American ME and CFS Society, but there is never enough to go around.  Our group approached #MEAction with ideas around setting up an emergency fund in Colorado.  #MEAction staff and board were incredibly supportive and receptive and worked through all the logistical, legal and procedural hurdles for us and launched the fund last month as a pilot program.
 
I'm hopeful that after seeing the fund work well over the next year, #MEAction will expand the program to other chapters.  It will certainly not be enough to meet everyone's basic needs, but we do hope that the fund will take some of the edges off some people's worst times.  It is a reminder that at our best times and worst times, we all have a supportive community with #MEAction Colorado, so we are never truly alone.  #MEAction has groups for all the US states and many groups organized by affinity.  For those who are interested click HERE.  In 2020, wishing someone's holidays to be merry and/or happy might be setting a pretty high bar for many of us, but I do wish that everyone's holidays are meaningful and that 2021 may be much better for us.

 
ME Advocacy Ideas
by John Kelty, Chair, MEAction Colorado 
 
You can help advance ME awareness and health equality in many ways as we wind down this historic and, for most of us, very difficult year.  2020 brought us a unique opportunity to make traction on ME advocacy during the COVID-19 pandemic, which is of course just a silver lining on a global tragedy.  At the same time, as we in the ME community are uniquely aware of the lifelong and severe changes that will be awaiting many COVID-19 longhaulers, I think we have a certain obligation to do everything we can within our health and energy limits, for those who have had ME for a long or short time and for the many who will join the ranks of those with ME.
 
Here's a few things you can do to make a difference now:
  • Contact your representative to ask them to co-sponsor H.R. 7057 (yes, again!) to fund $15 million a year in ME research.  From Colorado, still only Rep. Perlmutter has co-sponsored so he needs our thanks and the other 6 need our urging.  For instructions, click HERE
  • Join Senator Bennet's town hall next Friday, December 11, at 9:00 AM to ask him to keep supporting ME health funding.  RSVP HERE and message me or email me at john.kelty@meaction.net for specific instructions.
  • Contribute to an MEAction fundraiser on-line or start your own.  Probably you have such fundraisers in your social media.  Also you can donate HERE, or donate to your favorite other ME charity as there are many great organizations in this fight.
  • Join MEAction at Invisible Disabilities Association's annual Gala, which is online on Saturday, December 12.  Sign up HERE.  IDA fights for awareness and better support for all people with invisible disabilities and has been our first and best allied group in Colorado.
  • Fill out a quick survey for Cardiff University's (in the UK) study on how ME effects families. 
Thank you for all the things you do!  

 
ME in the Media 
by John Kelty, Chair, MEAction Colorado   
 
 
 
The UK project, Dialogues for a Neglected Illness, has released some excellent videos of patient accounts of various symptoms of ME.  Two of the patients included are also medical doctors.  
 
 Living With ME/CFS Is Hell, And Many COVID Longhaulers Are Experiencing It Scarymommy is "one of the largest, most influential and trusted sources of entertainment and information for millennial moms online."
 
"New Test for Chronic Fatigue Syndrome Could Help COVID-19 Patients", talks about a potential molecular test that is in trial.
 
 
"Long Haulers: The Continuing Casualties of COVID-19" in healthcare journal EMS World makes numerous references to ME.  





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.