November 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. 


Lara Heisler, Editor
Jim Lutey, Editor 
ME Patients Can Help COVID Long Haulers
by Tom Strobel, MEAction Colorado Steering Committee Member

Those with any experience with ME/CFS know PEM, Post Exertional Malaise.  It's the onset of fatigue, weakness and brain fog that follows overdoing physical activity, cognitive exertion or sensory overload.  It doesn't just go away with some rest and may lead to a debilitating "crash".
COVID Long Haulers are those who have gotten sick with COVID and who are not getting better.  They are having cardiac, respiratory and inflammation related problems and are experiencing persistent fatigue, brain fog and other symptoms that ME patients know unfortunately too well.  They're also "sharing" our PEM.
The COVID Long Haulers are going to the same doctors and assorted health care professionals that ME patients go to and often are getting the same meager and not so helpful answers that we received.  Worse, they may hear that they must get back to "normal", exercise, and return to work, with the implication that it's "all in their head."  
People with ME and their supporters can help COVID Long Haulers.  We can reach out to them by being the voices we wish we'd heard when we started this journey.  If they're told to tough it out and get just better, we can point out that we've heard that too and that we know it's not that easy.  If they're told to get some exercise, we can point out that if that exercise doesn't feel good and in fact makes them feel worse, that it's ok, not a character fault and can be explained by PEM.
We can reach out by using some of the suggestions found on the ME Action page about Stop. Rest. Pace.   Here, there is information about pacing in the context of PEM and its counterproductive effects.  We can share this on social media.  There are directions for doing a 2 minute long video, as either a person with ME or an advocate/caregiver, or using your Twitter account to get the word out that the frustration that COVID Long Haulers are feeling is valid and that there may be alternatives to chronic exhaustion.
The large number of people who are COVID Long Haulers will challenge the health care system to better treat those with post viral infections and that should include those with ME/CFS.  We can help by reaching out and contributing by sharing our experience in the Stop.Rest.Pace. program.

Colorado Healthcare Plans Open Enrollment
Open enrollment for state-based health insurance is November 1 - December 15, 2020 for coverage starting January 1, 2021.  If you have Colorado-based health insurance, here is a quick primer to help you make the best choice from available options.  Thanks to Colorado's Chronic Care Collaborative for this guide.
Here are some links that you might find useful.

PolyBio Research Foundation    

 "PolyBio Research Foundation is a new non-profit organization determined to transform how chronic conditions like ME/CFS are studied, diagnosed and treated.  It was founded by three scientists with complementary expertise who have joined forces to conceptualize hypothesis-driven research projects on ME/CFS, with a focus on identifying root cause drivers.  The core PolyBio team is Harvard neuroscientist Mike VanElzakker, microbiologist Amy Proal, and human genome biohacker Kris Fobes.  The PolyBio scientific advisory board members herald from both biotech and academic backgrounds, and have made impressive novel advancements in science and medicine." from The #MEAction Network
To learn more about PoliBio, please click HERE.

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
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.