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#MillionsMissing Protest Demands Now Available

Discussion in 'Action Alerts and Advocacy' started by JaimeS, May 3, 2016.

  1. JaimeS

    JaimeS Senior Member

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  2. duncan

    duncan Senior Member

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    Super work! Well done! A huge and resolute step forward.
     
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  3. aimossy

    aimossy Senior Member

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    This campaign is brilliant work in my view, thanks for posting it up Jaime.

    "Funding multiple requests for applications (RFAs) for ME/CFS over the next three years, for a total of $10M the first year, $20M the second year and $25M the third year. this is in no way directed at Jaime, she is sharing the info which I am grateful for."


    One thing I don't understand properly is this specification regarding asking for a $10M RFA in the first year. Many illness groups regularly can get a $20M RFA per year I think?

    If the NIH was going to put out a 15 or 20M in the first year (I know wishful thinking) could this specification have them thinking "Oh - ok we can get away with 10 we will just do that then.". There could be reasonable rationale around this and I could be missing something completely - but it really had me thinking - 'eh'?

    We already have two teams that need $5M each, Davis and Lipkin/Hornig, the faster they get these funds the quicker they can get the work done. This is not even mentioning other great teams who need to be funded as well and seeding for new researchers.

    This is not a complaint and not directed at Jaime at all, she has kindly shared the information, I'm just scratching my head over this 10M first year RFA demand.
     
    Last edited: May 4, 2016
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  4. JaimeS

    JaimeS Senior Member

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    Yeah, to some extent I agree, @aimossy . In my mind, we should ask for the moon, because it's more likely they'll aim for some kind of compromise, right?

    It's difficult. We want to appear (and BE!) reasonable, and I think this request to ramp up funding shows that we are aware that pennies don't fall from the sky. Reallocating funds takes time, it's not a decision one person can agree to and make it so. It's committees, and meetings, and the money itself has to come from somewhere -- likely the funding that once belonged to other illnesses.

    We want to make sure that it's logistically possible for our demands to be met.

    All that said, that is my assumption. As Managing Editor, I prettied up the language, re-structured a paragraph or two, and ensured that everything was grammatically consistent. A team of collaborators wrote up the document together, many of them with a great deal of experience in advocacy. Which is not to say that they or the document are infallible, but to say that they probably do have a specific reason for this. I'll ask.

    Finally, I wanted to mention this because it's so awesome: many of the people helping us are involved in AIDS and HIV advocacy. We're learning a lot from them!

    Jaime
     
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  5. aimossy

    aimossy Senior Member

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    Thanks @JaimeS I understand and thanks to you for asking about it. I reiterate that this effort and campaign in my view is excellent and appreciate the effort by all making it happen.

    Edit to add - this isn't a demand of course but just opinion. I think a first year RFA demand of 20M is quite reasonable if other illnesses get this regularly. That way we could get some significant boosting to programmes that need significant funds now and have some left to seed fund and bring in new researchers. I guess it's possible the other asks in this document may also be significant in cost, and the people who collaborated on this may be taking this into account with respect to the general picture.

    Thanks again Jaime
     
    Last edited: May 4, 2016
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  6. timeforchange

    timeforchange

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    Thank you @JamieS to all involved for putting this together. This is great progress!
     
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  7. JaimeS

    JaimeS Senior Member

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    So here's the skinny on the ramping up of the RFAs.

    We want other things funded as well, especially investigator-initiated research pursuing the avenues that make the most sense to them - e.g. Davis' work, clinical trials, etc. RFAs are very targeted.

    Additionally, we are in a deep hole because of the decades of neglect - we need to build up an ecosystem of researchers, academic centers, pharmaceutical companies and even clinicians and correctly diagnosed patients to be able to effectively use a 250M budget and ensure we get good biomedical research... rather than some of the junk research that has come out of hastily-assembled studies with researchers without a good background in the illness.

    I can't take credit for the "build up an ecosystem..." explanation... that is a GREAT line. :)

    -J
     
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  8. aimossy

    aimossy Senior Member

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  9. Justin30

    Justin30 Senior Member

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    Ok.....so I am a bit in awe.....

    Thank you JaimeS for all this work.....

    ZIKA Virus, HIV, Ebola, are all serious life threatening diseases......they in a matter of years and some in months recieved $Billions in research.

    I really dont know what to say the disease burden is at least 17 to 22 milliom worldwide.

    It involves Neurology, Immunology and every other facit of the human body.....

    They figure roughly on average that this 1,625,000 million people have this disease. In the US.

    25% of those house bound or bedridden which 406,000 Americans stuck inside.

    I am just speechless about this request for:

    $10million yr 1
    $20million yr 2
    $25million yr 3

    I personally believe this grossly miscalculated considering your amount of beddridden, housebound dieing ME patients is equal too or more than MS that produces the same amount of studies per year than ME has in its entire existence....

    Thats right MS considered very serious though still is said to have higher QOL Scores than ME releases 5,000 papers per year!!!!!

    A great point was made Davis and lipkin both need 5 mill this year.....

    What about Simaron Research, Jarred Younger, Bateman and Horne Center, and others.....

    The 10 mill is gone immediately.....with others having to raise money....

    I know this is how things work....

    Was the $ Figure not taken into account that The NIH sends funds worldwide for research?

    MEAction I dont understand? Please explain it to me???????

    Good, intelligent, experinced, researchers are drawn to study illness that are funded did we forget Male Pattern Baldness gets more money then we do.....yet:

    • Over 400,000 in the US cant leave their homes
    • These 400,000 have been linked to more comorbidities then I can count
    • What about the other 1,200,000 with varying levels of disability
    • More cant work, the economic burden is huge
    • There has been years of neglect
    • Families ruined...lives ruined
    Im sorry but I feel this disease like many others do in a severe way an knowing how many sit inside all day or are confined to beds common....

    I am upset, shocked, and not happy

    If I am missing something please fill as I am open to things that I may not fully understand me in cause I am reasonable person but was a negotiator/businessman and this seems sideways...
     
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  10. Justin30

    Justin30 Senior Member

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    My post was not directed at @JaimeS but I would like to understand better the RFA #s
     
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  11. Justin30

    Justin30 Senior Member

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  12. Rrrr

    Rrrr Senior Member

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    note: the demands are asking for $250M per year dedicated to ME/CFS. the RFA’s are just part of the research package the demands are asking for.
     
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  13. JaimeS

    JaimeS Senior Member

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    Correct; and this figure of $250 M was calculated based on the disease burden, including prevalence and the research funding afforded other multi-system illnesses such as MS.

    You can learn more about what an RFA is specifically here; but the gist is that the RFAs make up a fraction of what we are asking for.

    -J
     
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  14. lnester7

    lnester7 Seven

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    @JaimeS , I tried to get a friend that is a great researcher in a very recognize university into CFS, she was very willing but after I went through the whole process, I understand why is so hard to get new researchers on board.

    The universities are established and get the $$ from Disease X. What happens is that the researcher is honest so is under the clock from that disease (the grant pays their time). But they cannot apply for a grant unless you have a hypothesis and some interested work to present. Unless the researcher puts their own time (which between research and teaching and all the dog life they have) also the tools and the materials (which they cannot use for something off the books). And when you go and ask the university for money for a different disease, they only do that to establish new researchers, the ones that are established (trust me you want this kind because of the experience) then they will not get the money to get establish in another disease. So you are stuck in the chicken egg situation.

    So if the ME community wants new researcher, would be good to study what is the process to start from scratch and put the money so they can get the enough things they need to apply for a grant.


    If the NIH gives the grant money, it will be for nothing unless we can get funding for the initial work to prep the grant application.

    Just a thought.
     
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  15. medfeb

    medfeb Senior Member

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    Justin30 - you've made excellent points about the magnitude and urgency of the need and the dollars that are required to support that. I've read that it can take $5M a year to support a single university lab and that is the average annual amount this disease has received since 1995.

    The figures that you quoted are specific to the RFA, not the total request in the demands document. RFAs are directed to a very specific purpose, e.g. validating biomarkers or some other well defined objective for which NIH has defined a specific funding opportunity. According to the NIH site,
    "an RFA is a formal statement that solicits grant or cooperative agreement applications in a well-defined scientific area to accomplish specific program objectives. An RFA indicates the estimated amount of funds set aside for the competition, the estimated number of awards to be made..."
    I understand that RFAs can take a while for NIH to develop and issue. For that reason, the demands document requested one each of three years in a row with increasing funds each year for a total of $55M in 3 years.

    But NIH uses many types of grant mechanisms, not just RFAs to progress research. The most common type of grant is an R01. R01s are investigator initiated grants in which the investigators request funding to pursue self-defined research. My understanding is that NIH typically likes to fund hypothesis driven research. But the state of this field requires hypothesis generating research like that being done by Ron Davis. To date, for this field, that kind of work has been funded by private foundations, SolveME/CFS and individual donors, all of which has provided only small dollars.

    What is being requested is a diverse package of $250M in investments - not just RFAs - to jumpstart this field. Those other types of grants will be necessary to enable work like Davis's, Lipkin's, etc to be done. To ensure the needed early research can be funded funded, the document specifies that investigator initiated research includes hypothesis generating research. Much of the work that Davis is doing right now would not qualify for a targeted RFA.

    One advantage that RFAs do have is that they come with a set financial commitment. It has been difficult to get the institutes to commit funding for R01 grants - together with the misunderstanding toward the disease, that has kept us stuck at an average of 5M a year, since 1995. To ensure that the financial commitment is there for any type of grant, the demands document specified that each of the separate institutes involved make a defined strategic and financial commitment to this disease.

    The intent of laying it out this way is to ensure that NIH takes advantage of all the options at its disposal to jump-start this field, not to restrict the type of grants to RFAs or the amount of funding to 10M for the first year. Perhaps, the document could have specified at least that much in RFAs to make that clearer.

    Does that help? Please let me know if you have questions or additional comments

    Here is a list of the types of grants that NIH uses
    http://grants.nih.gov/grants/funding/funding_program.htm
     
    Last edited: May 6, 2016
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  16. Justin30

    Justin30 Senior Member

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    @medfeb

    Thank you for the clarity.....when I read over the MEAction...I was seriously confused as to how this was actually going to work.

    Their were 2 documents on 2 pages and that seemed disjointed from from one another.

    I am Canadian an do not ubderstabd the process.

    Thank you for the clarity. I am starting to understand.

    That being said does MEAction have more specific terms that will be submitted to the HHS, NIH and CDC?

    I would hope that a clear objective has been set as I was confused more so on the $s and cents than anything else.
     
  17. JaimeS

    JaimeS Senior Member

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    @Justin30, you should read the protest demands in their entirety! http://millionsmissing.meaction.net/protest-demands/

    Then you would have a clearer understanding of what they entail. :) There is nothing better regarding clearing it up than reading the original document.

    It should not be hard to read, it's just a few pages. Unless your brain fog is very bad today, I don't think it would be a problem.

    -J
     
    Last edited: May 10, 2016
  18. JaimeS

    JaimeS Senior Member

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