#MEAction Colorado September 2019 Newsletter

September 2019 Newsletter

Welcome to our second #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 [email protected]

Jim Lutey, Editor [email protected]

Introducing our Steering Committee by John Kelty

We would like to introduce an official Steering Committee for MEAction Colorado! The committee will help us by having a consistent group of dedicated volunteers working towards different parts of our mission. Having a committee will also allow decision making to be done more systematically and fairly, so when a vote is needed, there is a set group in place for this. We still have some openings. If you are interested in joining the Steering Committee, please reach out to me ( [email protected]).

Open positions:

MillionsMissing Chair
Treasurer
2-4 at-large members that won't have a specific role other than just being on the committee. I hope this is ideal for some sicker members of the community, so they can take part in a meaningful way when they are healthy and be absent when health requires it.

Filled positions:

State Chair/Advocacy Chair: John Kelty
Education Chair: Tom Strobel
Support Group Chair: Pam Lutey
Outreach Chair: Jim Lutey

As Advocacy Chair, I've been targeting US and State Congressional actions. As Education Chair, Tom helped arrange our Unrest screening and is coordinating outreach to UCHealth and other medical offices. Pam runs an on-line support group and can research available services that our members may have questions about. Jim has done outreach with the press and Rotary International.

Education Chair Tom Strobel and Diane Edes organized our screening of Unrest earlier this year.

Where to Find ME Information and Help in Colorado

Depending on how you found out about MEAction CO and what role ME plays in your life, there may be some helpful information that you are not aware of, so I will summarize information we know of here.

Our Facebook Page which focuses on advocacy efforts and community support: facebook.com/groups/meactionco
A list of recommended doctors is pinned to the top of the FB group.
Our webpage, meactionco.net.
Support groups: www.meaction.net/groups/. MEAction has support groups based on geography, ethnicity, language, age, gender, orientation and religion at this link.
Colorado Social Services by county: https://www.colorado.gov/pacific/cdhs
For one-time financial help when in a crisis, the American ME and CFS (AMMES) is the best: https://bit.ly/AMMES1.
Colorado's Non-emergency medical transportation: https://www.colorado.gov/pacific/hcpf/non-emergent-medical-transportation


Dr. David Kaufman

You might like this video by Dr. David Kaufman about Diagnosing and Managing ME/CFS. It could be something that you might want to share with your doctor.

https://www.youtube.com/watch?v=RC9TjgE_PlU&t=1s

Invisible Disabilities Association

Invisible Disabilities Association (IDA) was our first ally. Ever since Diane found that the national group IDA is headquartered in Parker and reached out to them, they have supported us. Their founder Wayne Connell spoke at both our MillionsMissing events. Their key missions support the ME community and others with severe chronic illnesses. IDA focuses on these programs: Cleaner Indoor Air, and a National Disability ID program so someday people can quickly show an ID to law officers so that their invisible disabilities are more likely to be believed. They have a thriving online community.


Wayne Connell spoke in 2018 about his wife's many pairs of shoes and what they used to be used for and why they aren't used any more.

And best of all, their main fundraiser is the annual IDA Gala Awards. This year, they are awarding our very own hero and founder, Jen Brea, with their first ever Media Impact Award! This happens Friday, Oct. 18th at 6:00 at the Denver Marriott South. Jen will be there to deliver a (short) speech and receive her much-deserved award for her work with using Unrest to launch the MEAction movement. Depending on how scheduling works out, she may also be available for a short informal get together with our group.

Tickets are $150 or $100 if you are under 40. Half the amount is tax deductible. The event is fragrance-free and include dinner, silent auction, and headline entertainment by Illusionist David Laflin and Biff Gore of "The Voice." If you are going, put that you want to sit with the MEAction group so IDA knows to try to seat us together. For those who cannot attend, the event will be livestreamed except probably those two headliners.

Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO. Follow us on Twitter and Instagram @MeactionCO

#MEAction Colorado

[email protected]

https://meactionco.net/

https://www.facebook.com/MEActionCO/

720-312-2643

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.