Our First Year!

our first year 2018 300x meacIn February 2018, MEActionCO started as a FaceBook group with a handful of members. With guidance from MEAction’s national team, we managed to organize and plan for the first Millions Missing event in Denver. As the group grew slowly to about 35 members we pulled together to organize the event.

May 12th – We pulled it off. It was a drizzly cool day at the state Capitol when we got together for the first time for a morning of speakers and live music and mutual support.  We scored a little media coverage with stories about Pam and Nora.

We had barely caught our breath from the Missing Millions event when the word came from the MEAction Global network that Sen Ed Markey of Massachusetts had introduced Senate Resolution 508: A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.

We got to work and donned our red T-shirts again to meet with a staffers at the offices of our Senators, Cory Gardner and  Michael Bennet.

While we continued to push for sponsorship from our senators for SR 508, the US Department of Health and Human Services (HHS) threw a monkey wrench into the works. HHS had sponsored the CFS Advisory Council (CFSAC). Since its inception CFSAC’s charter had been automatically renewed every two years as its charter expired. But in September, without notice, HHS decided not to renew. Even the members of the Council were not informed.

We immediately renewed our discussions with our senators’ staffers.  As a direct result of our efforts, Sen. Bennet’s office joined Sen. Markey’s and others to contact the HHS on our behalf to demand answers.

MEAction’s National Congressional working group, with a coalition of other ME advocacy groups, drafted a letter to the HHS demanding an explanation and a plan to continue the work left unfinished when CFSAC was abruptly terminated.

MEActionCO members have been meeting in person and via phone calls with staffers from the offices of both Senators and 5 of our US representatives to ask for their support and signatures on the HHS CFSAC letter.  (Look for an update here on that campaign very soon).

While getting a baptism by fire in the workings of congressional lobbying, other actions were being initiated by MEActionCO members:

  • In July Holly Heiman volunteered to start the Doctor list. She collated feedback from members’ experiences with Colorado doctors who seem knowledgeable or willing to learn. The list is available to MEActionCO Facebook members.
  • On August Jim Lutey, husband and caregiver of his wife Pam, organized a presentation for the Greeley After Hours Rotary Club to raise awareness and understanding about ME. Jim is willing to share his slides with anyone else who would like to present to a group.

As we approach the end of the year our member list has grown to 120. Our To-Do list has grown as well. We commend all the efforts of our members in 2018 and invite everyone to participate according to their abilities and interests. There are lots of opportunities and we are all in this together.

 

MEAction CO member to be in NIH study

nih-study

Colorado #PWME Alison Sale was accepted into an ME study at the NIH, the “NIH Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”  Alison writes that “the criteria is very specific and I feel so lucky that I qualified and will have more answers soon.”  The NIH will be covering all expenses including travel to Bethesda and a stipend and conducting many necessary tests and providing consultations with specialists.

The study took a lot of work to get into–for Alison it involved “submitting LOTS of records and sending them a list of every provider I have seen since several years before I got sick even including pediatricians,” and will no doubt take a lot of mental and physical energy during the study, but will absolutely be worth it to get some well-deserved answers for herself and to contribute to ME research.

As far as we know, the NIH is still accepting participants who qualify for their very specific criteria which are listed at the above link.  There seem to be a few criteria groups, including healthy control group and Lyme Disease group, and some outpatient groups.  The NIH website says, “The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS.”  The study seems to be very extensive and to be done by solid ME researchers.

Alison, we all thrilled for you and hope you get answers about how to improve your situation and we all appreciate the large effort you went through, and will be going through, in order to advance ME research!  And perhaps there are others in our CO community who might check this out and see if they qualify as well.

Why I’m active with MEAction

Soon after my wife Julie was diagnosed with ME, I got involved organizing our Facebook group and working on MillionsMissing and then with helping MEAction’s Colorado group ever since.  Julie has a “mild” case of ME, for what that’s worth.  Mild in that she isn’t housebound and has periods of activity almost every day.  But ME being ME, our lives were still turned upside down and she cannot work even part time or be in large groups for long.

I didn’t do all this work for Julie though.  We thought for years she had MS and, other than small donations for MS fund raisers as thanks for the help their support groups gave her, I didn’t do any grand support or organizing.  My immediate family has a lot of conditions:  we have people with autism, depression, OCD, degenerative disk disorder and Tourette’s Syndrome.  But I do not organize or advocate on behalf of any of those conditions.

When I watched Unrest and  learned the severity of ME and the incomprehensible neglect by the CDC and NIH, I decided I needed to organize and help the #MillionsMissing as this is truly a fight for social justice. Continue reading

Write to Sen. Gardner for SR 508

contact gardnerHi Everyone! It’s time to show our senators that we still care about Senate Resolution 508 in support of our goals for finding a cure for ME. We’ve been doing phone calls so let’s change it up and send messages this week. Here are  instructions on how to send him a message on his website. Read through it first, put in your name and contact info and change the message for your situation.

Use this link  for the contact form for Senator Gardner: Continue reading