The book can be ordered on Amazon.  Click HERE for the link.

 

Contributed by Jim and Pam Lutey

 

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! 

 

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)