February 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 
 
New Book on ME by Dr. Byron Hyde

According to Dr. Hyde, he believes that ME is just another form of polio. Here is a short description of the book.      
 
The Return of Polio to the USA highlights how the disease of Polio is still very much present across the world today and indeed, because of the lack of understanding of the disease by health authorities, especially the CDC in the USA, causes great suffering and pain and even death, to those afflicted with this disease. The book points out that though Polios 1,2 & 3 have largely been controlled through the Salks and Sabin immunization that there are other forms of Polio that are misdiagnosed or even ignored. The book points out that Polio is primarily caused by viral enteroviruses, of which there are many. It also describes how the misunderstood affliction of Myalgic Encephalolmyelitis (M.E.) is a form of Polio that is caused by the same enteroviruses as Polio and that M.E. epidemics occur at the same time as Polio epidemics. Dr. Hyde also spotlights how the greatly undeserved attention that the 'catch-all disease', Chronic Fatigue Syndrome, receives is partly responsible for the prevailing ignorance about the actual occurrence of Polio and M.E.
 
Dr. Hyde delves into these matters at length and concludes with recommendations for health policy authorities on how to address these issues and protect society from a disease whose occurrences can actually be controlled and reduced. He also thanks Rotary International for all they have done to help with polio.  
 
The book can be ordered on Amazon.  Click HERE for the link.
 
Contributed by Jim and Pam Lutey
 

Congressional Update
by John Kelty, MEAction CO State Chair
 
Remember back to the spring and summer when we had Congressional actions regarding appropriations requests for more ME funding?  We were asking our members of Congress to send letters in support of additional Centers for Disease Control (CDC) funding and allowing ME to be included in the list of diseases that Defense Department research funds can be spent on.  Well, Congress can move very slow but we finally have some great successes to report back on.  MEAction and Solve ME/CFS Initiative leaders spent many months on these issues, as did countless people with ME and our friends, families and allies.  The final score:
 
* While CDC funding was not increased, it was not removed from the budget.  This is actually a first for us.  Every year in recent memory, the funds were removed from the budget, and CDC research on ME was halted, while we then had to advocate for it to get added back in.  This year, there is no doubt, the money is there, and CDC can continue working on ME research with no months-long interruption while they shut down and started up again.  And really, pretty much nothing got increased in any area of this year's budget so this was not a surprise.
* ME/CFS was added back to the Department of Defense (DoD) research disease list, so researchers can apply for a fair share of hundreds of millions of DoD research funds.  This is a huge opportunity!
* During the process, Emily Taylor at Solve got a bonus addition into the appropriations bill, including a requirement that Health & Human Services has 90 days to reply to us with a plan regarding what they will do to replace CFSAC (Chronic Fatigue Syndrome Advisory Committee... remember when they shut that down on us about a year ago?!)

Well done, ME community!  We all in CO played a key part in keeping the pressure on the Defense and Appropriations subcommittees.  Representatives Crow, DeGette and Perlmutter all signed a letter in support of these items to the committees.  Both our CO Senators' health experts contacted the defense department committees asking for ME research to be included in the DoD list.  This was not only essential to keep our items at the attention of the Congress committee members making the decisions, but also represents the first thing that Sen. Gardner's office has done for us. It is a sign that we are continuing to strengthen our ties and leverage with those in power.

Keep up the good work and please stay actively involved with us in all of our calls for action.  Collectively and individually, we do make a difference! 

 

How to Get Help and Help Us

Here are some ways you can help right now in our fight for ME health equality.  For more information on any of these, please reach out to me (john.kelty@meaction.net or 720-312-2643).
 
* Join us at the state capitol March 19th and/or Feb. 20 to meet state legislators and push for ME awareness.  No experience needed!  Everyone is encouraged to join us!  Click HERE for details.
* If your representative is Rep. Lamborn or Rep. Buck call and ask them to co-sponsor H.Res.399 ( https://www.congress.gov/bill/116th-congress/house-resolution/399/).  
* If your representative is Rep. Perlmutter, we need someone to be our primary contact for him.  This is a way to make a big difference for us and establish a working relationship with his health policy expert.
* Go to political events and meet current politicians and candidates for office and talk to them about ME awareness.

Need support and help from the Colorado ME community?
* Pam Lutey ( plutey@aol.com) can put you in touch with on-line support groups and find volunteers who can help you navigate the system if you need help with government and medical paperwork, claims or appeals and/or finding groups that might help with financial assistance.
* Doctor recommendations from our group are available in the facebook group.

John Kelty, MEAction CO State Chair
 

ME International Update
by Jim Lutey, President
 
ME International had its first board meeting by conference call on January 23, 2020.  Board members were confirmed and officers were elected.  The bylaws and conflict of interest policy were adopted.  Two committees (Newsletter and Website) were established and we will be sending information about other committees to our members (65 worldwide at this point).  We have established a bank account and discussed other items that need to be completed.
 
ME International recognizes ME (Myalgic Encephalomyelitis) as described in the International Consensus Criteria (ICC) as a distinct disease and is separate from Chronic Fatigue Syndrome as described in the 1994 Fukuda definition and is also separate from ME/CFS-SEID as described by the IOM in 2015. The purpose of ME International is to support ME organizations, educate the general public, medical providers, and governments throughout the world, and support ME patients, caregivers, advocates, and family and friends.
 
Current board members are:
  • Jim Lutey, President (Colorado)
  • David Steckel, Vice President (North Carolina) 
  • Mary Kelley, Treasurer (Colorado)
  • Colleen Steckel, Secretary (North Carolina)
  • Jennifeer Caldwell, board member (North Carolina)
  • Pam Lutey, board member (Colorado)
  
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Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
  
 
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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.