Poll: Should #MEAction sign this NIH Letter?

Share on facebook
Share on twitter
Share on email

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.
 

[yop_poll id=”1″]

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

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]

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

NHS England omits advice to apply clinical judgement re vaccine

It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and GPs in the UK has omitted advice that health professionals can and should apply their clinical judgement when placing people in group 6. Vaccination of people with underlying health conditions that put them at risk of

Read More »
Waiting for Superman Book on table

Waiting for Superman – UK Book Giveaway and Review

Do you want to win a free copy of Waiting for Superman? We have three copies to give away to people in the UK!  To enter, all you have to do is follow #MEAction UK on Instagram, like and comment on this post. The deadline is 9am (GMT) Monday 8th March! Win a copy! Thank

Read More »
#MEAction activists outside Scottish Parliament

Scottish Election! Ask your MSPs to support people with ME

If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people with ME. Email your MSPs The Holyrood elections are coming up on 6 May 2021 and we want to make sure that MSPs are aware of ME and the desperate need for support. There are more

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top