Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Ann Romney: I'll be the first to lobby against Trump's cuts to NIH

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Apr 9, 2017.

  1. Jennifer J

    Jennifer J Senior Member

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    (Above, whole article is quoted, divided into quotes to emphasize parts.)

    http://thehill.com/blogs/blog-brief...the-first-to-lobby-against-trumps-cuts-to-nih
     
    Last edited: Apr 9, 2017
  2. ahimsa

    ahimsa Senior Member

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    Thank you for posting this! Since Ann Romney has MS I'm sure she understands the importance of medical research.

    We need to have bi-partisan support for NIH funding and against the NIH cuts. After all, diseases don't ask your political views before they hit you!

    There was a recent article in the Washington Post about not being prepared for a pandemic (key posts still vacant, budget proposal with cuts to NIH & CDC, etc.) I was happy to see Republicans also making public statements against cuts to health agencies:
    full article => https://www.washingtonpost.com/nati...a5314b56a08_story.html?utm_term=.ad2f82f894ba
     
    Last edited: Apr 15, 2017
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  3. Sushi

    Sushi Senior Member Albuquerque

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    This thread has been moderated due to political comments from members. It will have to be closed if the discussion veers away from the specific topic discussed in the opening post--funding of the NIH.
     
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  4. Alvin2

    Alvin2 If humans were rational...

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    The thread itself is political, if politics is verboten then the thread itself is in violation is it not?
    I understand the position that politics can get out of hand, but if kept in hand then it can be valuable
     
  5. Kina

    Kina

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    Please read the rules.

    Yes it is political and we do allow discussions that are related to ME and cuts to the NIH will definitely affect patients so sticking to how cuts will affect ME patients is fine.

    Generic political comments that are unrelated to the thread topic will be removed. General comments slurring one political party or another are not allowed as members who belong to the slurred party will feel insulted. If members can't handle this, then I guess a no politics allowed at all rule will have to be instituted.
     
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  6. Sushi

    Sushi Senior Member Albuquerque

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    Note, I see @Kina has posted while I was writing my post--I'll just add:
    Here is the wording of our rule:
    In this case the funding of the NIH (and its funding for ME/CFS research) are relevant to members of this forum.

    The opening post quotes Anne Romney adding her voice to the discussion ("Romney, who is living with multiple sclerosis, said it's important that NIH continue receiving funding so that progress can be made and people can eventually be treated using new research.") This is a news item, and is relevant to us...but discussion of political ideology is out of bounds here because members will have very different opinions.
     
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  7. ahimsa

    ahimsa Senior Member

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    Thank you to the moderators for getting this thread back on track! :)

    I think it goes against our own interests to depict support of NIH, CDC, ADA, etc. as being associated with a single party or political view. I applaud anyone who supports more research funding for ME/CFS (of course!) and also anyone who supports more NIH research in general.

    Isn't it better to try persuade more folks to support NIH funding (and fight proposed NIH cuts) rather than assuming they will be against it?

    It may sound Pollyanna but I'd rather light a single candle than curse the darkness.

    This is why I worked to get my US Representative to sign that recent letter (see http://forums.phoenixrising.me/inde...-for-me-deadline-april-4th.50422/#post-837750 )

    If nothing else it helped spread information about ME/CFS. Just think of all those staff members who listened to calls or read emails from constituents who have ME/CFS. And I put in some extra links in my email (e.g., a link to recent blog post by NIH director).

    PS. I thought I'd add this abbreviation list for those who need it:

    NIH = National Institutes of Health
    CDC = Centers for Disease Control and Prevention
    ADA = Americans with Disabilities Act
    (lists what accommodations for disabilities are required but some companies must be sued to conform to rules)
     
  8. alex3619

    alex3619 Senior Member

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    Funding on medical research is already focused on what committees and other review groups consider the most important. I don't recall what the actual ratio is but only a small percentage of studies get funded.

    From an economic view I consider health funding to be an investment in nation building. It does not just make money in the long run, it makes the population more productive.

    Take ME and CFS, at about twenty five billion dollars per year in the US. What would a cure be worth, not in profits, but to the US economy? That is just one (or several) disease/s.

    Chronic diseases have a huge economic burden. If there were to be a change in focus it should be toward chronic disease, with an aim to investigating specific disease mechanisms then ways to target those mechanisms. Palliative care addresses the social and personal cost, but does not address the economic cost.

    Long ago I proposed the 0.1% rule. That is the percentage of economic burden that should be the minimum of what is spent in any advanced country. More if there is to be a focus on a specific problem, of course. That would put a floor of $25 million on ME and CFS research in the US, and would indicate most advanced nations are not doing enough in this area. Other nations need to get involved.

    I hope that protecting the NIH will indeed receive bipartisan support. The economic arguments do not support cuts. A goal for efficiency here means better targeting, not budget cutting. That can be achieved by setting objectives. I would suggest chronic diseases and especially underfunded diseases should be a priority.
     
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  9. Shoshana

    Shoshana Northern USA

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    Thanks for reminding me of that positive inspiration. I had not heard that in many years.
     
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