NIH & CDC leadership are failing people with ME/CFS

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#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective agencies. Their inaction to advance biomedical research, medical education, and care and treatment for people living with ME/CFS is unacceptable, and #MEAction holds them, and other top agency leaders, directly responsible.

Add your voice by signing onto this letter and let Dr. Koroshetz and Dr. Damon know that their failed leadership is allowing the ME/CFS crisis to continue to grow. They need to take action to become the drivers, not the obstacles, of meaningful progress for people living with ME/CFS.

#MEAction doesn’t take its decision to write this letter lightly. We have tried to find every way to partner with the NIH and CDC to solve important research, clinical, and policy challenges. We will continue to advocate for people with ME/CFS using a variety of methods in different contexts. We are continuing to work in coordination with the other ME organizations in the US, and we welcome any meeting, or engagement with federal agencies that can move us forward quickly and urgently. We’ll have more to say in the coming weeks about where we go next with our message and activism. 

But we have to be clear about Dr. Koroshetz and Dr. Damon’s failed leadership for ME/CFS. We have to hold them responsible for their lack of action. It has been six years since the National Academy of Medicine issued its comprehensive report with recommended actions. Where is an outcomes-oriented action plan for urgently meeting our community’s needs? Where is the funding and other resources for ME/CFS research, medical education, care, and treatment that will remediate the decades of harm and neglect of people with ME/CFS? Yet again, they led another ME/CFS interagency meeting where they offered no answers, no plan, and no expanded resources. 

#MEAction does not believe the community should be placated by vague assurances about progress, when they are not substantiated through the kind of robust federal response that we know our government is capable of when a crisis is acknowledged and prioritized. We have long heard assurances from agency leadership, and they have given us no new reason to now consider them credible.

When federal agencies get things right, we will give them credit. For example, over the past several months we have seen Dr. Koroshetz’s NIH institute (NINDS) make increasingly more direct statements about the connection between ME/CFS and long COVID. Those improvements in communication are important, but the key issue continues: a lack of commitment to an outcomes-oriented action plan that meaningfully addresses the known issues within the ME/CFS community. Dr. Damon and Dr. Koroshetz should be championing such an effort, but instead they have continued to evade their responsibility. If they want to be allies to the ME/CFS community, then they’ve got to demonstrate a commitment to results. 

Use your voice to join #MEAction in calling out failed leadership at NIH and CDC. People with ME/CFS deserve better.

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1 thought on “NIH & CDC leadership are failing people with ME/CFS”

  1. I’m beginning to believe that the people in power intend for us to be sick. With current technology they don’t really need so many of us. There is no longer profit in having a large healthy population, better to watch us suffer and suck up all our assets as we fade. Healthy people don’t lose their life savings to pay for medical care, or lose their homes because they are too sick to work. Healthy people don’t die young without tapping their pensions. Plus, healthy people are more difficult to control (it’s tough to protest from your bed).
    I think ME/CFS is just a warm up for how those in power will treat Long Covid patients. We’ll have many more millions of sufferers with no help in sight. NIH refusing to fund research or even utilize solid research! Instead they’ll push faulty therapies that have done great harm and are designed to muddy the waters of effective research and treatments, while providing an excuse to deny disability. I pray I am wrong. Please tell me I’m too cynical. But, I think the neglect is intentional. They say “misery loves company” we’re about to get a lot of it.

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