Check out our latest newsletter for the monthly calendar, Coloradoans in the news, an update on the state task force effort, two memorial notes and news summary of Epstein-Barr. Thank you editor Jim Lutey!
Author Archives: johnmeactionco
January 2022 Newsletter
Our January 2022 Newsletter is here! Check it out for ways to get support, the monthly calendar including a cool online concert and a med review from one person’s experience. https://conta.cc/3Hry3ds
And because I forgot to post it to the blog earlier, here are the December and November editions. The December edition has information on Rocky Mountain Human Services and the CURES 2.0 Legislation which includes COVID Long Hauler sections. The November edition has a recap of the meeting two of our wonderful healthy allies had with the health policy expert in Representative Crow’s office.
Oct 2021 Newsletter
Check out our October 2021 Newsletter for info on the Invisible Disabilities Association annual Gala, an NIH update, info on how you can help us advocate for ME funding, and our monthly calendar.
The Pandemic is still raging. The government is still not helping PWME and Long COVID patients. Time to advocate again!
Below are 4 easy instructions for advocating for ME & Long COVID health equality if you want to skip ahead.
If you want to act but you don’t have the energy for all this please reach out to me at firstname.lastname@example.org or on FB messenger and I’ll have someone provide you simplified personal instructions. Your voice is as important as anyone else’s… it is more important quite frankly… we can help you be heard within your energy limits.
I feel this may truly be the best opportunity we’ll ever have for to strike towards ME health equality and do something meaningful for Long COVID patients. We must catch Congress’ attention before the moment passes.
So bear with me… It is time to advocate again! We need your help to tell our members of Congress to co-sponsor the COVID-19 Longhauler’s Act and COVID-19 and Pandemic Response Centers of Excellence Act. There aren’t yet enough supporters in Congress and the Colorado Members of Congress have not yet been very supportive (exception: Rep. Neguse).
So please, even if you have contacted Congress already about these acts, do what you can now within your safe health limits.
STEP 1: Call and email (or if you can only email then that’s fine) Senators Bennet and Hickenlooper using these instructions.
STEP 2: Find out who your Representative is if you don’t already know: https://www.house.gov/representatives/find-your-representative
STEP 3: Call and email (or if you can only email then that’s fine) your representative using the appropriate file below.
STEP 4: Ask a couple of your friends or contacts to do the same. Seriously, we really need you to do this. We may be small as far as disease advocacy groups go but with your help we can be as mighty as we need and deserve to be.
Thank you so much for all the big and little things you do,
September 2021 Newsletter
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.
July 2021 Newsletter
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 email@example.com.
Support the Pandemic Response Centers of Excellence Act
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.
June 2021 Newsletter!
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 2021 Newsletter
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
Ask Congress to support the COVID Longhaulers Act
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