Poll: Should #MEAction sign this NIH Letter?

Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia Burwell, US Secretary of Health asking that the NIH:

  1. Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability.
  2. Fund a mix of intramural and extramural research (as NIH does for Multiple Sclerosis and scores of other diseases), including a focus on identifying diagnostic biomarkers.
  3. Form and fund translational networks and centers of excellence, utilizing clinical experts in the field to build on recent collaborations and findings.
  4. Design and fund clinical trials for drug development, so ME/CFS patients can have our AZT; government can catalyze private investment by the pharmaceutical industry; and scientists can study the responders.
  5. Present a plan to ramp up funding to a per-patient level on par with Multiple Sclerosis over the next two to three years.

You can read the full draft of their letter here.
#MEAction has taken a big tent approach, supporting and sharing a wide variety of advocacy endeavors. However, there are times when we need to speak as one voice. Several American ME and CFS organizations have signed onto this letter. We would like to take a vote of registered #MEAction members to decide whether or not #MEAction should also sign this letter.
You can vote using the poll below. Have feedback? Leave a comment. Voting closes at 11:59PM Pacific Time on Sunday September 27th.
 

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8 thoughts on “Poll: Should #MEAction sign this NIH Letter?”

    1. I would second both comments above.
      By definition our voice is weakened – why, I type this on my iPhone while lying on my back in a darkened room – to weak to sit up or meet even the most ordinary level of daily demand.
      Stronger ones must take responsibility for weaker voices, who in turn must acquiesce with grace and trust.
      How else can we go forward as a group?
      There is in our group such marvelous insight, goodwill and fortitude. I trust in our ability to go forward, united by need and mutual respect.

  1. I would like to see at some point something that addresses the past neglect of ME/CFS and asks for compensatory research dollars to make up for it. I voted yes but as long as we don’t mention our past mistreatment by the NIH , we are not in a position to ask for compensatory funding which I feel we deserve.

  2. I think Esther makes a good point. In addition I don’t know if the people who will be receiving this letter are aware of the extreme suffering of people of this illness. We’ve all suffered physically, financially and psychologically as the result of the lack of research and the dismissive way we’ve been treated by the medical community in general. If it is at all appropriate I think they need to be aware of how devastating this illness is to its victims and their families.

  3. I agree with Esther and Michele’s statement. People with ME have suffered immensely over the last 30 years (since ME hit the national media)from neglect and denial by both our government and the medical establishment. We should be due compensary funding.

  4. I’m surprised at how gently this message was conferred and would recommend slightly stronger wording. Get us out of the Office of Women’s Affairs and into NINDS. Now. Tell them how much money we’d want for this next year and each year thereafter and give the stats. There are 120,000 clinical trials going on in the US right now and CFS/ME/SEID is not one of them. Everyone else is, however. I’m afraid that we need a lobbyist as that would appear to be the way that our government operates, sadly speaking. Different people have appealed via the Washington Post, various letters, emails, going to DC, speaking to Orrin Hatch, all to no avail. If Collins was going to be moved consequent to all of this, I’d think he would have done so already. And what of his cohort who is actually over our area? He has done nothing for us since arriving in his office in 1984. However, I did sign the letter and do approve of such actions. Though they may yield nothing we must keep trying. Thank you. Marcie Myers, [email protected]

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