Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies as we surpassed our first fundraising level of US$15,000/UK￡11,178. While this fundraising adventure is all about putting the FUN in Fundraising, the work #MEAction has done within US Federal Agencies has been imperative to improving the national dialogue around the understanding of ME and the great need for more research funding.
As your Huntsman of the Agencies, (yes, I revealed to you my character early!) I have been working with a hearty band of US advocacy volunteers to hold the National Institutes of Health, the Centers for Disease Control, and the National Center for Health Statistics accountable to people with ME, but it’s a very dense forest to chop down!
One volunteer warrier, Denise Lopez-Majano, finds meaning in her quest.
“The collaborative, supportive nature of #MEAction and its focus on improving the lives of PwME led me to volunteer with MEAction.” And she continues, and she’s not alone.
The secret path through the forest included:
- Calling out NIH & CDC for their failed leadership and unwillingness to lead a strategic and resourced interagency approach to meeting the needs of people with ME.
- Urging Congress to hold the NIH accountable in its response to the Long COVID crisis and recommending that NIH expedite clinical treatment trials for Long COVID patients of repurposed drugs currently being used in the treatment of ME.
- Public comment response & petition on why the CDC evidence review was flawed and the report that recommended CBT and GET be stopped.
- ME/CFS researchers, #MEAction, OMF, and Solve M.E. wrote a joint letter to NIH leadership regarding the research agenda for Long COVID, including suggestions that would shed light on ME/CFS.
- In advance of the Trans-NIH ME/CFS Working Group telebriefing, #MEAction and Solve M.E. submitted a list of questions about ME/CFS research that we requested they address during the meeting.
- #MEAction will submit a petition letter to the National Center for Health Statistics in support of our seven organizations’ joint proposal to fix the catastrophic lack of ME/CFS tracking in the US. Sign the petition now to make sure your voice is heard. We’ve also created an email template so people can submit individual comments in support of our proposal.
Why does this matter, you ask? The great warrior Denise has an answer for you:
“I strongly believe the federal agencies must fully engage with the ME community and must be more transparent about their work. I therefore strive to make a difference in getting federal agencies to always have meaningful stakeholder engagement in all things related to ME.”
The quest is necessary.
“What keeps me going is the continued imperative to improve the quality of life of PwME – including those with Long Covid who now meet the clinical definition of ME.”
Help our Huntsman and the hearty band of advocacy warriors on our quest to fight for equity! We are at US $19,313/UK￡14,393 help us get to US $20,000/UK￡14,905 (our next Fundraising Level Adventure–where we will reveal the rest of the staff’s adventureland characters) by donating today! While this is all fun and games, the fight is very, very real. Outside pressure on agencies works – we’ve seen it time and time again. We are the organization who delivers that pressure. I’m asking for your support.
Fight on,
Ben
P.S. We also know that this illness has stolen so much, including our livelihoods. Many in our community are not in a position to give financially. That is why it is so important that if you can give, give. And if you can’t, it is equally important to share our campaign and help spread the word, whether that means writing friends and family, starting an online fundraiser on our behalf, or sharing our campaign on social media. This way others who are in a position to support #MEAction’s work financially, hear about our work and our Giving Adventure Campaign.
