We Made Real Progress at #MillionsMissing — Here's What's Next

“Medical Frailty” was the key phrase at this year’s #MillionsMissing because it matters in order to truly validate diagnosis and experience, fund research, and protect people with ME from harm. 

Our US Action had very clear wins. #MEAction’s focus this #MillionsMissing was educating key allies at the HHS about ME - with a focus on protecting Medicaid for ME, Long COVID and other infection-associated diseases. 

From a policy perspective, this has been an extremely productive #MillionsMissing. At the HHS event, we were joined by Dr. Stephanie Haridopolos, Acting Chief of Staff and Senior Advisor to the U.S. Surgeon General. Dr. Haridopolos expressed her allyship and recognition of ME as a serious, complex disease. We also met a Center for Medicare and Medicaid Services staffer who was very open to discussions. These are not small. They are clear victories when many obstacles are standing in our way. 

There are many next steps, but we have a real shot to save Medicaid for people with ME and Long COVID - and our campaign to do this State-by-State will continue throughout the year. It is not a simple process (even if we do achieve our goal of getting ME and Long COVID in the exemptions list), but with the relationships we built this week and our grassroots-state level plan, we are ready to help people with ME save their healthcare access. 

#MEAction advocates and staff had a successful series of meetings with 11 Congressional Offices about appropriating funds to the ME/CFS Research Roadmap, many of those in partnership with @NotJustFatigue. We are very excited about the relationships we have built with Congressional Offices, and the strategy we’re taking away. The next step is seeing what makes it into the first draft of the appropriations language. Until then we have time to strategize what to do based on what is included. 

Unfortunately, the NIH Director, Dr. Bhattacharya, needed to reschedule our meeting to June. But this could be a blessing in disguise because we may have more information on appropriations by then so we can come in even more informed on how crucial it is for this funding to be allocated internally if Congress doesn’t have enough support to include it in FY2027. This approach is multi-pronged and we are working every angle to both fund research and protect healthcare. 

#MEAction needs your support to continue. Our advocacy efforts are moving things forward for 2027 and we need your contribution to put the power we can towards funding research and protecting healthcare. Great news is we have a $7,000 grant from an individual donor to support our advocacy efforts! That means every $ that is donated now until Monday will be matched up to $7,000!

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