US HOUSE action and COVID Leg package update

Happy International ME/CFS Awareness week! Thank you again for being part of the largest ME/CFS Advocacy Day ever just three short weeks ago. Thanks to your voice, your advocacy, and your hard work, we’ve made big steps towards our goal of increasing federal funding for ME/CFS research. I wanted to share a quick update with you about our progress on Capitol Hill so far.

SENATE

• Following our mobilization on April 21, Senator Ed Markey agreed to lead our initiative to include ME/CFS research in the next COVID-19 package. We are working closely with his staff and our partners at the Massachusetts ME/CFS & FM Association to finalize this Senate leadership letter.
• We are waiting for Senator Markey’s team to “greenlight” this action. When this happens, we will ask you to contact your SENATE contacts to ask for their support. We will also have a sample request for you to make this follow-up easy. Look for another update soon (hopefully, later this week!).

HOUSE OF
REPRESENTATIVES

• Our legislative package is still under consideration by several offices. It is our intention to introduce legislation in the coming months *only* if our Senate initiative for inclusion in the next COVID-19 response package fails.
• While we wait for those outcomes, we continue to build strong relationships with HOUSE members to set the stage for our next push.
• If you have the energy for an additional “check-in,” with your meeting contacts in the HOUSE OF REPRESENTATIVES, this is a great time to reconnect. Use the message below to share with staff in HOUSE offices only.
• Your online Meeting tool is still active if you’d like to return to the system and check your meeting notes. You can also email me at (etaylor@solvecfs.org) if you need the name or email for your meeting contacts.

HOUSE ONLY: Sample ME/CFS Awareness Week check-in


Dear [NAME],

Thank you again for connecting with our team on April 21 about ME/CFS and COVID-19. We are so grateful for your time, especially during this turbulent crisis. I hope Representative [LAST NAME] will find our information about ME/CFS helpful, especially in light of the post-viral nature of the disease and the current COVID-19 pandemic.

ME/CFS Advocates from 47 states met with 251 congressional offices on this vital issue – THANK YOU for being a part of this historic event!

May 12 is International ME/CFS Awareness Day and this week celebrates the resilience and strength of the ME/CFS community. And yet, it is a bittersweet celebration as an estimated 2.5 million Americans reflect on the high cost of ME/CFS. Millions have lost financial security, lost independence, or even lost loved ones as a result of this terrible disease. And we fear many more will suffer similar losses as a result of COVID-19.

During this global viral pandemic, raising awareness of ME/CFS is more important than ever. Up to 80% of cases of ME/CFS are initiated by a viral infection. We have a well-founded fear that COVID-19 could increase the number of cases of ME/CFS in the United States by 250% within two years. As the Senate and House leadership continue to draft legislation to tackle the most urgent needs of this crisis, we urge Representative [LAST NAME] to help raise awareness and educate their colleagues about ME/CFS.

Thank you for joining us in celebration this week. I hope Representative [LAST NAME] and your team feel the same concern about post-viral diseases as your constituents do and will help us bringing urgent attention and research funding to this upcoming public health crisis.

Sincerely,

{YOUR NAME}


Additional Materials that may be helpful:

• COVID-19 Recommendations from Solve M.E. (PDF) – an issue overview of post-viral ME/CFS following COVID-19
• “What does COVID-19 portend for ME/CFS?” (PDF) – Dr. Mady Hornig, Associate Professor of Epidemiology, Columbia University Medical Center
• “Will There Be a Post-COVID-19 Form of ME/CFS?” – Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School, Senior Physician at Brigham and Women's Hospital, Editor in Chief, Harvard Health Letter
• FY 21 House Appropriations Letters ME/CFS – LHHS & DEFENSE (PDF)

I hope to have more good news to share with you from our Senate champions later this week. Thank you again for being an ME/CFS Warrior! Please don’t hesitate to email me if you have any questions or if you need the email address of your staff contacts.


All the best,

 

That would be huge. There are going to be billions... BILLIONS... in funding going to COVID research. Even a tiny % of it would basically dwarf the current annual worldwide ME funding from all sources combined.

Because right now the NIH is still at the "we hope it does not happen" phase from a few weeks ago, it seems to be happening, and now I don't know what comes after "well it did happen so now what?" but I will safely assume it's no action at all unless it's mandated by a higher authority.

Because the current ME infrastructure has no capability for this, at NIH, CDC or any other institution. There is no leadership, no plan, no strategy, just running out the clock. The funding has to be congressionally mandated for this purpose or it will never be put to productive use.

There could be a case to make as well of the impact on medical care and public health from medical personnel that will be out of the workforce. This makes it personal. Right now it only happens to "others". But it would be terrible for medical care capacity if a significant % of very expensively-trained physicians can no longer work because medicine has nothing but platitudes to offer them. They are not replaced easily, quickly or cheaply or any combination of those. That would be a very self-inflicted wound. Which, not coincidentally, is very much so.

I will leave this with a marvelous tweet from last night by Jaime: "This is how inequality comes home to roost in disability politics: when you ignore the needs of a community that's constantly in open enrollment, it can bite you in the end."