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NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!

The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working to schedule the meeting, and will keep you posted on the date.

The meeting will include #MEAction Executive Director, Jennifer Brea, #MEAction’s Director of Global Community & Campaigns, Ben HsuBorger, activists Terri Wilder and Mary Dimmock, patient and scientist, Dr. Becky Taurog, PhD, and patient and immunologist, Dr. Rochelle Joslyn, PhD.

In the letter we sent to Collins, which included photos from the #MillionsMissing demonstrations and over 7,000 signatures from our community, we demanded that the NIH significantly ramp up research funding to be commensurate with the disease burden, which studies approximate at $190 to $250 million.

We will discuss how the NIH can begin implementing specific mechanisms within the next 12 months to reach the following three key goals:

  • Validate one or more clinically viable ME biomarkers to increase diagnostic accuracy within 3 years
  • Begin NIH-funded clinical trials of one or more drugs as treatments for ME within 1½ years
  • Secure FDA approval of at least one treatment for specific usage in ME within 3 to 5 years

Prior to Collins agreeing to meet with #MEAction, the director of the National Institute of Neurological Disorders and Stroke (NINDS), Dr. Walter J. Koroshetz, M.D., had responded to our demands with this letter. This letter articulates the historic actions NIH has taken, but falls far short in its lack of urgency in addressing the full scope of needs for ME research and clinical care.

This meeting is a direct product of your efforts in May to advocate for our needs! We could not have reached this important step forward without your advocacy. As always, we are grateful to this community and honored to work with you!  Together, our voices are a powerful force for change.

Below are just a handful of photos to showcase the hundreds of protesters who turned out on the streets or took action from their homes or beds last May as part of the #MillionsMissing 2018 campaign to demand investment in biomedical research and clinical care for ME from their governments. The pressure from these protests has enabled our community to show Collins that he can no longer ignore the millions missing from their lives due to ME. 

 

Manchester

Categories: #MillionsMissing, Actions, All News, Featured news, NIH, Uncategorized

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7 comments on “NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!
  1. Lisa Harms says:

    Hooray! Thank you MEAction for all your hard work and relentless pursuance of our demands for the NIH! I know there’s a long road ahead but getting Francis Collins to meet with you is a big first step. He cannot ignore us. I know I’m in good hands with you, that you are fighting for our best interests. And thank you for accomplishing something I long knew we desperately needed but thought impossible because of our incredible debilitation. You have united us around the world and given us a voice. I have suffered with ME/CFS for over 3 decades and have felt so alone. I no longer feel alone.

  2. Liz Burlingame says:

    FINALLY! Brilliant! Thank you, #MEAction Team!!! I can only imagine the work that went into securing this meeting. I have brooded over the June CFSAC meeting and the lack of NIH response to the #MEAction letter for months. Again, thank you so much for your diligent work.

  3. dc advocate says:

    Thank you for your dedication and continuing to lobby on behalf of the community.

    I’m curious if there’s any direct action around the resolution of the CFSAC (CFS Advisory Committee) and/or if #MEAction might be able to broach the subject as appropriate.

    Reference:

    From: OS OPHS CFSAC (HHS/OPHS)
    Date: Thu, Sep 6, 2018 at 10:48 AM
    Subject: CFSAC sunset
    To:

    The charter for the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a discretionary (not Congressionally mandated) entity, expired on September 5, 2018. During its unusually long tenure, the CFSAC advised the Secretary of Health and Human Services on a number of issues related to myalgic encephalomyelitis/ chronic fatigue syndrome. The committee and ex-officio members ably fulfilled the duties in the charter, which included informing the public and health care professionals about the illness, and insuring that input from patients and caregivers was incorporated into Departmental research now being conducted by NIH and CDC. The Secretary, on behalf of the entire Department of Health and Human Services, wishes to thank the committee and its many members who served so diligently over the years for their hard work and dedicated service. He also wishes to thank members of the public and the advocate community for their participation on various work groups, as well as for their support and dedication to this cause. HHS remains committed to working with stakeholders to support the critical research and programs necessary to discover the causes and treatments for this disabling disease.

  4. Wendy Boutilier says:

    Dear #MEA

    I would appreciate if you would kindly pass this to Ms Brea.
    #MEAction does not represent the ME Community. Everyone should be fully aware that what the CDC is doing is simply changing the name from ME/CFS to SEID Which cannot be found anywhere in the current WHO ICD 10 and it isn’t included in the WHO ICD 11 which starts in 2022. There are a variety of criteria based in the USA that are not good for anyone but if your choice is SEID then please refrain from suggesting that you are representing me as I have ME-ICC along with approx 4400 others. I’m not writing this to be rude or ignorant but Ms Brea should not be appointing herself as the point person of the ME Community if she can’t understand and explain coherently what Myalgic Encephalomyelitis actually is because it’s not SEID. Even the IOM panel states that those who meet there requirements of the ICC 2011 is not covered under SEID. By taking the lead without in depth understanding about what is ME and what is not. This isn’t a question about the name. It is a question about criteria and until Ms Brea can take the time to discuss things with those who are at the more severe end of ME then she doesn’t represent us. This announcement is about SEID not Myalgic Encephalomyelitis.

  5. Robert Tinti says:

    Dr Collins, your help is desperately needed. ME/CFS has been neglected for too long. Doctors need to know the biological findings and not think that it’s a psychological condition so patients are not being abused.

  6. Jenni O'Connor says:

    PLEASE help us! I’m a mom with 2 terminally ill children and I’m very ill myself with ME. I became suddenly ill after caring for a patient while I was pregnant and never recovered. I’ve lost so much time with my kids, our time is already limited with their Pompe diagnosis. We are not deathly sick by our choice and this can happen to anyone, it’s time that everyone comes together to support one another and fight for our lives.

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