Colorado activist Jim Lutey has introduced a Rotary Club resolution to encourage research, education and funding for ME! ME-CFS RESOLUTION Proposed by Dist. 5440 3-13-2019-4

The resolution’s purpose is to “leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness on the need to educate the public and medical practitioners on the importance of treating and ultimately finding a cure for those suffering from ME/CFS.”

Jim (in the MillionsMissing shirt) proposed it at his and Pam Lutey’s local chapter and then took it to District 5440 which includes all of Wyoming, north central Colorado, and a bit of Nebraska and Idaho.  The resolution passed within District 5440 unanimously with the 55 member chapters.

Now, the District will submit the Resolution to the Rotary International Council on Resolutions and there should be a final outcome in November.

This has already been a long process and we give our heart-felt thanks to Jim and Pam Lutey for their long hours and leadership on this.

Biff Gore sings at IDA Gala

We would like to thank Lee-Anne Du Plooy of Highlands Ranch, CO for attending the 2018 Invisible Disabilities Association’s Award Gala. IDA was a proud supporter of us at the 2018 MillionsMissing. Their mission resonates with many PWME – not being believed about their disease simply because it’s not as visible as many other diseases. The organization promotes believing patients, disease awareness, education and connection for people with invisible disabilities. Two of their key missions are having invisible disabilities recognized by a new symbol that does not represent visible challenges only; as well as their “Cleaner Indoor Air Campaign” which strives to help so many of us with environmental sensitivities.

In addition to being a great fundraiser, the Gala featured live music, headlined by Biff Gore from Season 6 of The Voice, and many awards for activists of invisible diseases. The event was live streamed and I believe that videos of it will be made available at some point. Lee-Anne said she had a great seat up front and that the event was festive, uplifting and inspiring, with lots of good food, and that it was incredible to hear Biff up close like that. You can check out a recap of much of the night’s events at https://www.facebook.com/InvisibleDisabilities/videos/331493710731521/ .

MEAction CO member Erin McGrath single-handedly scored the ME community a major public event:  she will be a “living book” at the Ft. Collins downtown library on Saturday, Feb. 2!  Erin says, “this is an incredible opportunity to help educate the public of all ages, on invisible illnesses, chronic illness, and what ME/CFS really looks like. I’m over the moon that they are doing this type of event!!!”

Erin has had ME since 2015 and was only diagnosed after Unrest clued her in to what her doctors’ didn’t know to diagnose.  She had had Fibromyalgia for many years before that until it had gone into remission.

The Poudre Library District describes the concept, “Instead of checking out print books, you “check out” people serving as books in the Living Library.  Though simple in name, the actual Living Library experience is rich and wide-ranging for both you, the reader, and the storytellers, the books. You hear the real-life stories of people in your community who have volunteered to share their unique perspectives, talents, backgrounds, or experiences.”

Erin hopes this will “inspire others to look for similar programs at their libraries, or even to pitch the idea to them and come as a book themselves as well.”  My Parker library does not seem to have this concept so I will pitch it to them sometime.  Additionally, I think many libraries allow you to set up a table or display outside as part of your free speech rights.  I did this once for some other event in Parker and the paperwork was simple.

Stay tuned for more information and check out her Facebook event!

Well done, Erin… we all thank you for seizing this great opportunity and look forward to Feb 2!

We’ve been gathering useful ME info in different places so wanted to put the list in one place for handy reference. We hope you find it useful!

Our home page, meactionco.net

Our Facebook group :  part support community, part activist network, open to all PWME, caregivers, loved ones and allies with Colorado ties.

Global MEAction site with info on advocacy and many other support groups

Reviews of medical providers in CO as related to ME

Videos from the 2018 Denver #MillionsMissing.

Photos and additional videos from 2018 Denver #MillionsMissing.

Emails for me (john.meactionco@gmail.com) and Diane (meactionco@gmail.com) . 

Mailing list for Colorado ME advocacy efforts when we are doing an email or calling campaign or signing a petition for example — email me to request to be on this.

Invisible Diseases Association

Is it possible that Cortene found a key to ME/CFS? Time will tell…

There’s a promising new drug being tested to hopefully cure ME/CFS by attacking its theorized root cause.  This article on the HealthRising blog goes over the details of the trial, the drug and the theories and science behind it.  It is all very exciting.  The associated blog posts go over the science in depth, explaining how people with ME/CFS/SEID have their stress systems always on, always producing serotonin.  The drug they are testing would be very targeted, specifically at the cells that are pumping out the excess serotonin.  So the effect could of the drug could be very quick although unfortunately remaining drug trials will not be.  Fingers crossed and best of luck to Cortene!