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The NIH Plan for ME is Dismal

Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.”

Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows:

  • NIH is going to wait for the new Collaborative Research Centers to lead to more research proposals, rather than investing money to stimulate that research now.
  • NIH has no intention of addressing the need for a consensus case definition now, and has chosen an approach that could take a decade or more.

Read more about Spotila’s description of the NIH’s current plan for ME.

We Cannot Wait 

Meanwhile, the #MEAction community is taking the matter into its own hands and has issued a comprehensive plan that it plans to deliver to NIH director, Francis S. Collins, within the week. Sign the letter to show your support for this rigorous plan. Deadline to sign is Tuesday, May 22 at 12 p.m. PDT.

The #MEAction plan calls for significantly ramping up research funding to commensurate to the disease burden, which studies approximate at $190 to $250 million. The letter details specific mechanisms that the NIH must take within the next 12 months to reach our key goals, including.

  • To validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years;
  • To begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1 ½ years
  • To secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years.
Sign the Letter to Francis Collins

 

Categories: Actions, Advocacy, Featured actions, NIH, Research, Uncategorized, United States

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5 comments on “The NIH Plan for ME is Dismal
  1. Jessica kaplan says:

    Please help give us life while we are alive!!!! We can not wait!!

  2. We can not wait!! Please help us to find a cure while we are still alive!!

  3. Lisa Harms says:

    I just can’t believe this and yet why am I surprised. I’ve been sick with ME/CFS for 32 years and I have seen nothing change with respect to the ongoing, willful and intentional neglect of us by the government. I’m so angry and fear that in my lifetime I will not see it change. Thank you Jennifer Brea and all others who are making MEAction possible.

  4. Mhairi Barker says:

    There is now evidence to suggest that ME is a disease caused by an faulty immune system gene that leads to chronic infections, intolerances, allergies and illnesses. We need more research. We need treatment. It’s is highly probable that because it is left untreated, it is causing mitochondrial dysfunction and disease, which is fatal. There has got to be a way to speed up the process for funding, before more of my friends and myself dies. I’ve already suffered with chronic illness my whole life and 2 years ago I collapsed, had mini-stroke like seizures, heart problems, ended up in a wheelchair, have had major mobility problems and it feels like I’m running out of batteries. Yet none of the doctors in my country (Scotland, UK) believed me. They all thought I was making it up. For the past 20 years the doctors have ‘labelled’ me with anxiety/ depression, but yet I’m not anxious or depressed. Please help. With thanks and praise to the Lord. Amen

  5. Maschelle Mashburn says:

    I was afraid to believe that the NIH interest was real… I believed our government before. Even with proof in their hands of the biological findings of the proof of severely ill people they have the power to help us or condemn us. This is why we need checks and balances in our government to prevent corruption from harming Americans.. yet the NIH is running roughshod all over us.
    I honestly feel like I am not long fir this world. I am 56 yrs old and have been suffering from cardiac problems. I can’t even stand up without my lower extremities swelling hideously quite rapidly. I know that I am far too ill to survive any major surgery. Even removal of a subcutaneous cyst is a wound that will not knit. When stitches are removed the wound pops back open. I barely have the strength to lift my head, and I keep forgetting to breathe. I have a 17-yr old child that I am raising alone and she’s never had the true experience of having a mother. She doesn’t deserve this. I need to be here with her still!
    how could they? after all the pious spedches denouncing acts of gross harm and even murder Committed by other governments upon their citizens they do this to millions of Americans crying out to them to save their lives! I feel so dehumanized.
    I feel like I have no worth.
    How are other advocacy groups going to handle having shaken the hands of these people, believing that their conversations and promise of commitment were a victory for us all? I just can’t. I no longer believe anything our officials say.

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