October 2021 Newsletter


Welcome to our #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. 

Jim Lutey, Editor jimlutey@gmail.com 
Dr. Francis Collins to Leave the NIH
by John Kelty, Chairman, #MEAction Colorado

Dr. Collins, nemesis of ME research, to leave NIH this year.

Those who have been in ME advocacy for a few years may recall that the entire 2018 #MillionsMissing campaign was targeted towards NIH director Dr. Francis Collins. It is well known that ME funding is dead-last at the NIH when compared to disease burden; it isn't even close.

As a direct result of #MillionsMissing 2018, Dr. Collins met with MEAction and said lots of nice things... and continued to do nothing and to ignore us. Any sort of attention to us at the NIH is still languishing despite the COVID-19 Longhauler post-viral link.

Recently things have begun to pick up at the NIH. Click HERE for an excellent blog by Health Rising. This is thanks to the $1.15 billion that Congress granted the NIH for studying Long COVID. Even Dr. Collins apparently isn't capable of doing nothing in the face of $1.15 billion. It is my opinion that no matter who replaces Dr. Collins, things will improve for us at the NIH because the new person couldn't possibly go lower than the low bar Dr. Collins set.  

I hope the replacement at the NIH is wise, perhaps from a diverse background, and is able to actually take on complex problems like ME. I hope that the replacement will acknowledge the link between Long COVID and ME so that we can be prepared for the next pandemic, and I hope that they work towards the answers that have been denied the ME community for so long.

And until then, here's wishing Dr. Collins a quick and complete departure from the NIH. I look forward to seeing what #MEAction does to raise the issue with the new director.

Advocacy Needed
by John Kelty,
Chairman, #MEAction Colorado

Advocacy continues to be needed to ask Congress to support ME and Long COVID funding.

ME Advocacy continues to be needed and any gains we make continue to be hard-won victories after lots of advocacy efforts... so if you can help us please go to bit.ly/meactionco-advocate and do what you can to contact Congress. If you have doubts about the need, you can consult the above flow chart. The link you should use is the above one, not actionkit21.com, but the rest I think still rings true.

Invisible Disabilities Gala
by John Kelty, Chairman, #MEAction Colorado

Invisible Disabilities Gala is Onllne, Saturday, October 23.

Join the Invisible Disabilities Association for their 14th Annual Awards Gala LIVE Worldwide, Saturday, October 23, 2021 at 5:00 PM MDT.

This year's theme is InVisible InCourage featuring The Voice Season 6, Four Chair Turn Contestant, Biff Gore - The Ambassador of Soul and award winning Radio and TV Personality, Denise Plante as the evening's Host.

You can virtually join #MEAction's table at https://ida.rallyup.com/2021-gala/meactionco/ and, if you are able, you can make a donation there. At the 2019 IDA Gala, Jen Brea was awarded the Media Impact Award. In the 2020 state legislative session, I was honored to speak in favor of their voluntary ID program at the State House and Senate committee hearings. IDA is always supporting us, and working hard to help people with all sorts of invisible disabilities and I hope you'll consider tuning into their event and making a donation ... all done virtually!

Upcoming Calendar of Events in Colorado

October 12, any time -- Please take some time today to contact Congress even if you have already done so several times. bit.ly/meactionco-advocate

October 16, 1:30: ME Caregiver Support Call

October 21, 12:00: MEAction Presents: Writing from our ME Lives

October 22, 12:00: Facebook live interview with Jean Meltzer who wrote a book featuring a protaganist with ME.

October 23, 5:00 PM MDT: 2021 IDA Awards Gala

October 28, 12:00, MEAction Presents: Writing from Our ME Lives

November 4, 12:00, MEAction Presents: Writing from our ME lives

If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at john.kelty@meaction.net.  

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