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Why #MEAction is Taking Action towards the CDC on Two Fronts

Categories: All News, Featured news

#MEAction has announced two CDC-related advocacy actions today and yesterday. 

We are asking you to contact your Senators to increase research funding for ME through the Centers for Disease Control and Prevention (CDC), AND we have also published an open letter to the CDC calling them out for insufficient transparency and accountability in their regular stakeholder engagement calls with the ME community.

Since our inception, #MEAction has spoken out both about the inequity of funding allocation and the government’s failure to make ME a priority. We have consistently fought for increased research dollars, more informed clinicians, and meaningful stakeholder involvement in federal agency programs.

We simultaneously advocate for more funding for federal agencies to address our priorities, and work to hold those agencies accountable to the community and pressure them to do better.  We are are doing both of those things over the course of 24 hours! 

This dual approach is intentional. We need to work both within existing structures of federal agencies in order to achieve important goals like a nationwide epidemiological study, and at the same time hold them accountable to the community. We must always demand excellence. We know that there isn’t time to waste. People with ME deserve active, accountable federal agencies to provide treatments, quality care and, one day, a cure.

As we announce both of our CDC actions – a request to contact your Senators and a letter to the CDC – we know you care deeply about both things: obtaining increased research funding, and holding the CDC accountable for its actions towards the ME community.

We work within imperfect structures and institutions. Knowing that, we have to make effective strategic decisions so that people with ME get the care, treatment, and research they deserve.

We ask you to take the actions today, to help us get a step closer to equitable funding for ME research.

 

Contact your Senator

 

Read our Letter to the CDC

 

Categories: All News, Featured news

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