Keep pressuring Congress for ME research funding

The US House of Representatives is considering HR 7057, which would give $60 million over a 4 year period to the NIH for research into post-viral ME.  In previous infections like COVID-19, a turnover rate from viral infection to ME/CFS was  around 12%.  So we need you to please keep up the pressure on the House to move this legislation forward.

Even if you have contacted them on HR 7057 already, if we want to ever see this funding, we need to keep up the pressure.  So to the extent that you have the energy and health to do so, and especially if you are a healthy ally, please work through as much of the below as you can, and repeat every few days if you can!

1. Rep. Perlmutter is the only Colorado representative to have co-sponsored it yet.  No matter who your rep is or what your party is, please thank him on Twitter at @RepPerlmutter and facebook.com/RepPerlmutter.  It could be as simple as: Thank you @RepPerlmutter for co-sponsoring #HR7057.  You are a true leader for #pwME and #COVIDlonghaulers in the fight for post-viral #MECFS research.
2. If Rep. Perlmutter is your rep, email him and call his office at 202-225-2645.
3. Like/Share/Retweet whatever you can about #HR7057 on social media.
4. If Rep. Perlmutter isn’t your rep, use Solve ME/CFS’s CONGRESSIONAL MESSAGING TOOL to send an email to your Representative.  Email them using some form of this email and call using this call script.   You can find your Rep’s email address at house.gov/representatives/find-your-representative.
5. HR 7057 is in desperate need of more Republican co-sponsors, so regardless of where you live or your party, please reach out to our Republicans on Twitter at @RepKenBuck, @RepDLamborn, @RepTipton.  On Instagram at repkenbuck, douglamborn and repscotttipton, and Facebook at facebook.com/buckforcolorado/, facebook.com/CongressmanDougLamborn and facebook.com/CongressmanScottTipton.  Just say something like:  @RepKenBuck, please co-sponsor #HR7057 to fund post-viral #MyalgicEncephalomyelitis research. ME always has a huge economic cost.  If we don’t do anything about #covidlong causing post-viral #MECFS, the job loss and economic impact will be devastating.

In solidarity,
John

August 2020 Newsletter

Check out our August newsletter to read about the latest efforts to improve research at the NIH and educate our medical providers, as well as for a tribute for Severe ME Day.

Ask your Rep. to co-sponsor post-viral ME Research Funding

Help us win support for post-viral ME/CFS Research Funding. COVID-19 survivors are frequently exhibing long term symptoms likened to ME. Sources from Dr. Fauci himself to CNN, Forbes and Fox News are mentioning ME in the context of COVID-19.

URGENT ACTION ALERT: Ask your Representative to Co-sponsor H.R. 7057!
Solve M.E. is proud to endorse H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, to authorize a $60m program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical education ME/CFS initiatives.

This legislation will bolster ME/CFS research at the National Institutes of Health (NIH) by an additional $60 million for ME/CFS research projects and expanding into connections between ME/CFS and COVID-19 survivors. It will also enable existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.

It is essential that as many co-sponsors as possible join this action in a united voice to call for increased funding for post-viral research into ME/CFS.

Please contact your Representative TODAY and ask them to ask them to join this effort.

We in the ME community know more than anyone the incredible suffering and life-long damage that post-viral ME will cause many COVID-19 survivors. Please do as many of these actions as you can. If you have questions or problems, please reach out to me (john.kelty@meaction.net):

• Use Solve ME/CFS’s CONGRESSIONAL MESSAGING TOOL to send an email to your Representative.
• Email your representative. If you want, use some form of this letter drafted by Solve ME/CFS.  At a minimum edit to add their name in the signature and yours at the bottom but the more personalized a letter the better. You can find their contact info via https://www.house.gov/representatives/find-your-representative.
• Call their office using this call script which has the phone contact info, again personalizing as you can.
• Post on social media and tag your Representative. You can use the graphics and sample posts attached.  On Twitter these are:
  @RepDianaDeGette
  @RepJoeNeguse
  @RepTipton
  @RepKenBuck
  @RepDLamborn
  @RepJasonCrow
  @RepPerlmutter
• Spread the word and ask anyone you can to do this!

July 2020 Newsletter

Our July newsletter is available (https://conta.cc/2VOzAoR)

June 2020 Newsletter

Check out our June 2020 Newsletter for a critically important take on post-viral ME, updates on US Congress advocacy, a quick look at the defunct Rocky Mountain CFS/ME/Fibro Association, and DIY tips on face masks.

May 12 is officially ME Awareness Day in Colorado

We’re excited to announce that Governor Polis has declared that May 12 is “Myalgic Encephalomyelitis Awareness Day” in the State of Colorado.”  Check out the full text of the Proclamation here.

Official seal of the state of Colorado and signature of Governor Polis

May 2020 Newsletter

Check out our May 2020 Newsletter to read about ME Advocacy Day, post-viral ME and COVID-19, and #MillionsMissing.

 

April 2020 Newsletter

Hello everyone, I hope you are all staying safe!  Here’s our April newsletter with some thoughts on living through the COVID-19 pandemic.

https://conta.cc/2WUalCR

(Here are Newsletter Editor Lara Heisler’s daughters Olivia and Emma as featured in the April story).

And I see that the March newsletter didn’t get posted here yet, so although some of it refers to events that were cancelled, it is at https://conta.cc/2wsFcuX.

 

Feb 2020 Newsletter

Check out our February 2020 newsletter at this link!  If you prefer audio versions of the recordings are here:

Congressional Update:

How to Help and Get Help:

Book Review:  The Return of Polio

ME-International Update

Join MEAction at the State Capitol

This year our biggest event will be Chronic Care Collaborative (CCC)’s Day of Advocacy at the State Capitol on Thursday March 19th.

For those who cannot make March 19th or for those who can attend two events, we’ll also be going to a Day at the Capitol with Colorado Consumer Health Initiative (CCHI) on Thursday, Feb. 20.  Information on that event is at the bottom of this post.

These events are instead of a Denver #MillionsMissing rally.

We need to start making ourselves known in a big way to the Colorado state legislature and CCC provides us the perfect opportunity.  I encourage everyone–PWME who are healthy enough, friends, family, caregivers, and healthy allies–to attend.  For those PWME who are too sick, we’ll provide some way of being there in spirit.  We’ve had some good turn outs for our MillionsMissing, and I’d like this to be even bigger so we can talk to as many state lawmakers as possible.  This is the best kind of advocacy–face to face interaction with decision makers!

We will be asking our state Senators and Representatives to support a resolution of awareness in honor of ME.  That’s the short term goal but the real goal is longer term–a working relationship with elected officials that will lead to more substantial ME legislation, and to develop allies who may get elected to higher offices.

No experience or special skills are needed.  Before the event, we will have an online training to walk people through the process and get everyone ME materials.  CCC will provide further training and materials on the 19th before we head over to the capitol.  Additional information including registration will be provided soon. It will be from about 8:00 to about 1 including meals.  After learning all we need to know from CCC in the morning, we’ll be grouped by district and head over to the capitol.

If it sounds scary, it isn’t–it is leading up to a short and friendly conversation with someone who was elected to serve you, and is incredibly rewarding.  As a disclaimer, our elected officials are very busy so sometimes it is not possible to arrange a meeting with them.

The Feb. 20 CCHI Day at the Capitol will be very similar.  Find out more about it and  register at cohealth.co/HCDA2020 .  If you sign up email me at john.kelty@meaction.net so we can coordinate and make sure you have training and material.

MEAction of CO has been a member of CCC since 2018.  Neither MEAction nor MEAction of CO has officially endorsed CCHI or any of its policies.

Be on the look out for more info and plan now to take Feb 20 and/or March 19th off if you need to, and we’ll look forward to seeing you there!