August 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 
 

The Fight for More Funding and Better Research at the NIH for ME 

ME/CFS has been in the news a lot lately, with Dr. Fauci mentioning it in an interview and press from CNN, Forbes, Fox and other sources covering that and other information on post-viral ME/CFS.  This presents both a unique opportunity for us and calls to light the past injustice done to people with ME for decades by governmental neglect, specifically but not limited to the National Institute of Health (NIH).

 
Although the post-viral nature of ME is probably well-known to most of our community, it is now becoming more common knowledge and research into COVID-19 and the previous SARS pandemics do show that significant numbers of people who survive such pandemics experience ME-like symptoms long after the supposed recovery period.  As some studies show the numbers being as high as 35%, which could more than double the number of cases in the US!

Solve ME/CFS working with our supporters in the House of Representatives to pass legislation that would allocate $15 million a year for four years to the NIH to fund research into post-viral ME.  Check out our blog for instructions on how you can contact your Representative to help us push for this funding.
 
At the same time, the NIH is part of decades of neglect that have left ME to be the least funded disease relative to disease burden.  (By this standard, a disease that is twice as common or twice as severe should get twice the funding in a fair world).  In fact, if the NIH funded ME at ten times current level, it would still be underfunded.
 
MEAction has published a report of NIH ME research and what they are and are not doing.  MEAction reports that "as more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the NIH is finally beginning to openly acknowledge the serious health risks posed to the public by ME/CFS.  The NIH is taking some important actions to fund and conduct research on the long-term health effects of COVID-19.  These are opportunities to understand post-viral chronic illnesses like never before.  But while these efforts offer some hope, when we look below the surface, we find a disturbingly familiar story: the NIH leadership does not have a coordinated, outcomes-focused strategy for developing diagnostics and treatments for the many who will likely develop multi-system illnesses from COVID-19."
 
To find our more, the link above has invites to an August 5 Community Meeting.  MEAction will be part of the NIH Interagency ME/CFS Working Group Meeting on August 11th at 1-3 Mountain time. It will be livestreamed at https://videocast.nih.gov/watch=38201

 
ME Doctors in Colorado 

If you are a person with ME or have a loved one with ME in Colorado, you've probably had troubles finding good medical care from medical professionals who are understanding of and accepting of ME.  There are almost no experts in the state so most of us have struggled or still are struggling to find the care we need and deserve.

We've collected recommendations and comments on doctors and medical providers from our members.  If you are in the Facebook group, the pinned announcement has a link to a Google Sheet that lists all these recommendations.  We encourage our members to add their comments.  You can send them to me (john.kelty@meaction.net) or PM me if you want to comment anonymously.

In my family's struggle for understanding, we spent years thinking that my wife Julie had multiple sclerosis (MS).  We were very aware of how wonderful the MS system is in Colorado, with the world-class Anschutz Center where Julie was seen by some of the foremost MS doctors in the country who knew all the current knowledge of MS.  When Julie found for certain she doesn't have MS, we researched the matter and found she in fact has ME and looked for Colorado experts.  It was a real shock that we could not find one!  We educated her Doctor, Dr. Heckman at Elizabeth Family Health, about ME.  She hadn't known but was very willing to learn and understanding and supportive of Julie's symptoms.

Dr. Theodore Henderson
We had two ME experts from CO speak at 2019's MillionsMissing. Dr. Henderson who has published about ME--while his practice is focused on Child Psychiatry, he in no way thinks that ME is just in people's heads--and Dr. Rosenthal who is a great ME expert but is no longer seeing ME patients.  Colorado is almost a total vacuum of ME expertise.

You can help change this by inviting your medical professionals to ME Action's Post-Viral ME/CFS Clinical Seminar which is on August 29th.  I encourage you to reach out and invite those who you or your loved ones see for ME.  Perhaps this will make it a little easier going for COVID-19 long-haulers with ME or other long-term conditions to find their way in their new realities and may come to help our current members as well.

HERE is the biography for Dr. Henderson.


 
Severe ME Understanding & Remembrance Day, August 8, 2020

This is a day to remember everyone who is suffering or who has ever suffered from severe or very severe Myalgic Encephalomyelitis (ME).  This day hopes to bring public attention to the illness for the sake of all those presently suffering from severe ME and to remember all those who have died from ME.  Click HERE for more information.
 
For Severe ME Day from August 6-8, #MEAction is hosting a channel on Telegram where people are invited to chat and connect with others.
 
Click HERE for more information and how to download the Telegram application for the chat.




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.