Our First Year!

In 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.

MEAction CO member to be in 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.

John at #MissingMillions in Denver 2018

Julie and son Xander

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.

Write to Sen. Bennet for SR 508

Let’s not leave out Senator Michael Bennet. Here’s a script and instructions to contact him.

Read through it first, put in your name and contact info and change the message for your situation.Use this LINK to send  Senator Bennet a message:

Write to Sen. Gardner for SR 508

Hi 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: