This month’s newsletter features a story by #MEAction’s new Executive Director Julie Miele on Arts and Severe ME Day. Also included is more information about the Bateman Horne Center, a research study and the monthly calendar.
Sorry to be late getting this pushed to the blog but this month’s newsletter is available. It features some information on getting disability insurance, the monthly calendar, and details on some studies you can take part in to help advance ME research. For more reliably prompt newsletter info, you can subscribe by emailing firstname.lastname@example.org.
Advocacy Time! Solve M.E. is supporting a second legislation now: the Pandemic Response Centers of Excellence Act.
This will fund 10 centers of excellence for research and treatment. We have a chance to try to get our Members of Congress to be original co-sponsors (deadline: Tuesday for Senate, Wednesday for House) so I’ve put together the below attached email & call scripts. Please take some time early this week to reach out if you can. I really think we have a chance to have someone from Colorado delegation do this.
I don’t have all the details but Solve is involved so ME will surely have a seat at the table as it were. The summary is:
The COVID-19 and Pandemic Response Centers of Excellence Act and its accompanying appropriations request would provide federal resources needed to support academic medical centers’ cutting-edge research, education, patient care, and community outreach as we continue to fight COVID-19 and better position the United States to swiftly respond to any other emerging public health threats. Namely, COVID-19 and Pandemic Response Centers of Excellence would seek to facilitate and expedite their proactive work on:·
* COVID-19 patient care and survivor recovery
* Mental health resources for frontline healthcare workers
* Combatting health care disparities and promoting health equity
* More robust public health endangerment research and education
* Future readiness to conduct diverse clinical trial research and vaccine research.
Our June 2021 Newsletter is here, with updates on State Advocacy including the Tribute that was read at the House, the monthly calendar and a reminder about the emergency fund.
State Rep. Alex Valdez reading a Tribute to People with ME and Long COVID.
April’s Newsletter has key info on #MillionsMissing and the upcoming Tribute to ME in the state House, a review of The Puzzle Solver, the monthly calendar, and how to support Advocacy Day efforts. https://conta.cc/3vCukUw
Last month many of us met with the offices of our Members of Congress to ask them to support the $93 million Longhaulers Act and many more of us contacted Congress the next day and posted to social media. The fight for funding is longer than that! While centered around post-viral COVID-19, this $93 million may be our best chance ever at serious funding for ME. Respect your health limits of course but if you are a healthy ally or can spare the energy, please do all you can from:
- Solve’s guide at https://actionkit21.com/
- Sign up for Twitter if you don’t have it already. It takes like 5 minutes and is a useful tool to amplify messages that are important to us.
- Like & Quote Tweet the following:
Add this as the quote:
25–35% of #COVID19 patients experience long-term effects. Please co-sponsor the COVID-19 Long Haulers Act. Help #StopTheLongHaul @PlzSolveCFS #MECF @RepDianaDeGette @RepJoeNeguse @RepBoebert @RepKenBuck @RepDLamborn @RepJasonCrow @RepPerlmutter @SenatorBennet @SenatorHick
Check out this month’s newsletter for tips on getting the vaccine, the latest Colorado legislation news and our monthly calendar. https://conta.cc/3mgXBAC
Invisible Disabilities Association (IDA) has been working to provide for an identification card for people living with invisible disabilities (or any disability) to use in situations like walking into a store, or being pulled over by law enforcement, or in any other first responder situation for example.
Please support their legislation before the 24th by email or providing written or video testimony. Instructions are below and if you want to help but need assistance just contact me by email@example.com or message me.
The program will be all voluntary, only those who want would be in the program. Imagine you or your loved one with ME having an ID on your drivers license or an entry in a license plate database that identifies your disability (if you want!) so an officer won’t expect you to have to walk if you have POTS or severe fatigue, or might anticipate your mental fog making conversation harder.
Please join in our support of IDA’s marquee legislation by emailing the state House Transportation committee (instructions are below) or signing up to testify by writing or video conference (really impactful and way easier than it sounds like!) following instructions from IDA below:
Our Colorado bill, HB21-1014, the disability symbol identification document, has been re-scheduled for hearing in the House Transportation Committee Wed., March 24, 2021 at 1:30.
The goal of this bill is to help identify those with disabilities to law enforcement and to prevent interactions that occur with people with disabilities from escalating.
THESE OPTIONS FOR IDENTIFICATION ARE STRICTLY VOLUNTARY, MEANING THAT IF A PERSON DOES NOT WANT THEM, THEY DO NOT HAVE TO GET THEM.
- Designated Symbol on Government ID. This is a discrete symbol on a person’s driver’s license or other government ID that allows for identification as someone living with a disability. The symbol is voluntary, and the lack of the symbol does not mean someone does not have a disability. No information is stored or available about the person’s disability.
- Database for Vehicle. This allows a person registering a vehicle in Colorado to include a field containing information to be provided to law enforcement upon querying a vehicle’s license plate to advise if a driver or regular passenger in the vehicle may have a disability or be neurodiverse. No information is stored or available about any disability unless voluntarily made known by the applicant.
- Training. The Department of Revenue will provide training for law enforcement and DOR employees to inform them of the presence of these fields and information they may contain.
Here is how YOU can help support this legislation:
You can provide testimony to support this bill in three ways: written, remote speaking or in-person. Here is the link to sign up to support through your testimony.
1. Write an email to every person on the Transportation Committee asking for their “yes” vote. Templates and contact info below.
2. Sign up for the bill testimony (written, remote or in-person). Here is the link to sign up: https://www2.leg.state.co.us/CLICS/CLICS2021A/commsumm.nsf/signIn.xsp
3. Share with everyone you know that you feel can help get our voice out there for this effort.
SIGNING UP FOR TESTIMONY: Once you’re in the system (by clicking the link above), choose sponsor and bill (Michaelson-Jenet), Meeting time (March 24, 1:30pm), and hearing item (House Transportation & Local Government HB21-1014 – Disability Symbol Identification). Then follow the rest of the prompts to submit how you would like to testify for this and your information. Here is a video that can help you through the process to testify. https://coleg.app.box.com/s/eiuzh3ld59q4ad8vohxb1zaup27zp2tn
Send the following email with your name to each of the contacts for the House Transportation & Local Government Committee:
Tony Exum, Sr., Chair firstname.lastname@example.org 303-866-3069
Matt Gray, Vice Chair email@example.com 303-866-4667
Jeni James Arndt, Rep., firstname.lastname@example.org 303-866-2917
Marc Catlin, Rep., email@example.com 303-866-2955
Meg Froelich, Rep., firstname.lastname@example.org 303-866-2921
Edie Hooton, Rep., email@example.com 303-866-2915
Andres Pico, Rep., firstname.lastname@example.org 303-866-2937
Janice Rich, Rep., email@example.com 303-866-3068
Tom Sullivan, Rep., firstname.lastname@example.org 303-866-5510
Donald Valdez, Rep., email@example.com 303-866-2916
Kevin Van Winkle, Rep., firstname.lastname@example.org 303-866-2936
Email Template and/or written testimony written for PWME. (cut and paste, and you can tweak as you want to include your own reasons for how this bill would help you or others). If you are writing on behalf of someone with ME, change the wording around that slightly.
Dear House Transportation & Local Government Committee Representative,
I have the invisible disease myalgic encephalomyelitis (ME). The disease prevents people with from having normal mental and physical energies. We may look normal but not have the energy to walk or even stand. Stressful situations like with a law enforcement officer may make us operate through a “mental fog” that impacts conversation. This program will help both people with ME and other invisible disabilities, as well as law enforcement officers by mutually helping their interactions.
I am writing to ask for your support and “yes” vote for HB21-1014, the Disability Symbol Identification bill in hearing on March 24, 2021. This bill provides for a voluntary symbol on a government ID and/or registration in the license plate database that allows for law enforcement to know that someone being pulled over may need accommodations or help in the interaction.
This bill also begins the process for creating new training for Peace Officers in better ways for interacting with people with disabilities or neuro diversities that will be addressed in HB21-1122, which you should also support.
Getting the symbol or registering in the database is completely voluntary, so for the people that are worried about discrimination, they do not need to get this. But please do not stop it for those who really want this type of support, such as the Deaf, people with mobility issues, people on the Autism Spectrum and other neurodiverse communities.
I thank you for your support of Colorado HB21-1014.
Please check out this month’s newsletter for information on how to register (deadline is tomorrow!) for Colorado advocacy day, upcoming ME events, and highlights from our group’s accomplishments last year.
Check it out for advice on navigating disability insurance, an update on our outreach to UCHealth and and update on Postcards to Doctors!)