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CDC and NIH Funding

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Aug 13, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    Viagra is a drug that has an effect on blood vessels and blood flow to certain areas of the body. It was originally developed as a potential treatment for hypertension and angina. It didn't turn out so useful for those things, but in the course of clinical trials, they discovered an interesting "side effect" which they decided was worth further investigation.

    Viagra (under another trade name) is used in treatment of pulmonary arterial hypertension (a relatrively rare condition), so it is good for some selected cardiovascular diseases. And Pfizer does continue to look at new uses, because believe it or not, the ED drug market has sort of leveled off - sales have not continued to increase after the initial excitement (heh heh) over the introduction of ED drugs.

    I'm a little stumped as to what "PTS" means in the above listing, but here is the full listing from clinicaltrials.gov about the study.

    http://clinicaltrials.gov/ct2/show/NCT00598585?recr=Open&cond="Fatigue Syndrome, Chronic"&rank=15

    Seems like maybe a long shot, but not totally unfounded, I don't think it's worth getting incensed about. Look at the length of the study and the amount of funding - pocket change.
  2. alex3619

    alex3619 Senior Member

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    Hi

    The viagra study seems to be a pilot study not a full study - just to find out if there is something to it. I confess I had the same idea some years ago, and was very worried that it could be harmful. With some research I determined that it would probably not directly raise NO levels so producing those kinds of CFS problems, and made a comment on another forum that it might be worth looking into at some point. It seems someone else has had the same idea. One thing that does concern me however is low blood volume. Manipulating vasodilation could be dangerous in CFS, it may actually aggravate brain function. I would be worried about negative side-effects.

    Bye
    Alex
  3. Hope123

    Hope123 Senior Member

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    The issue with NIH funding isn't just with numbers of sufferers/ economic cost/ etc. Certainly, these things are important and need to be said but these are the same points every other disease advocacy groups puts out.

    The point that needs to be made, especially if the message is to NIH, is that it is urgent that funds be placed NOW (not 2,5,10, years etc. from now) for CFS/ XMRV research. That is, the evidence has advanced enough that NIH needs to concentrate on XMRV/ CFS research rather than something else. The argument I see sometimes by the gov't is that there isn't enough evidence yet to fully fund CFS projects -- e.g. more preliminary data is needed (catch 22- how are you suppose to get pre-lim data without money?!) -- but that preliminary data IS coming in NOW and it shows a possibly chronic, disabling, transmissable infectious illness with no treatment and furthermore, there are possibly asymptomatic people who might infect other people. Hate to think we are competing with other illnesses but that is the reality as NIH has a limited pot of money.

    (War consumes a lot of money, whatever way you feel about it. 50% of US budget goes to defense.)

    Another point might be to put comparisons, maybe not in your ads per se, but in other disseminated materials to give people a context of the numbers. XXXX persons who have an illness or XXXX dollars spent might not mean much to someone but if you are able to say this is what CFS costs compared to X, Y, Z ilness, it might help. But it must be done in such a way that it doesn't appear like a contest of who is sicker.

    Another thought would also be to run the ad by family members/ friends who are not sick and get their opinions before posting it. A lot of times, the ideas we have about what our words convey is different from what our audience understands. Since the audience will primarily be people not sick with CFS, it is important to hear what non-sick people think of the ads. Too wordy? Too scary? Not enough details? "What am *I* suppose to do with this info?" Even asking a small number of people for their honest opinion is worth it.
  4. muffin

    muffin Senior Member

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    I too thought about the use of Viagra for CFIDS and getting oxygen to the brain in addition to the heart and the nether regions. Does anyone know if it does actually cross the blood-brain barrier and get oxygen into the brain? If it did, I would give it a shot. I'm a woman, what negative or "positive" side-effects could it do to me? Most interested in getting my brain working.
  5. muffin

    muffin Senior Member

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    PTS - I'm just guessing by context that they might mean PATIENTS. Other than that, I have no clue - as usual...
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, we plan to get the advice of the ad sales person, as well as possibly other outsiders.

    Already, even those who have our illness who have professional experience in this have given valuable tips to appeal to public. But we are hoping to get to a particular segment of public, at least the first time. So that means other changes.

    All of you guys are bringing up wonderful points. Now, can you put it in one sentence?

    And you are definitely right. We plan to have the ad, but have media talking points also.

    And information on a website that has more details.

    But, all of this can only happen with two things, people's effort and money. Can I interest you into taking the plunge? http://www.causes.com/causes/511536?m=f042604e The water is warm.

    Tina
  7. taniaaust1

    taniaaust1 Senior Member

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    XMRV being in prostate cancer could end up really helping us.. as they do certainly have money to put a ton of research into getting all the basic facts about the virus. So maybe we've got lucky with that connection (well if you arent a guy anyway)
  8. Sunshine

    Sunshine Senior Member

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    US Govt funding for CFS is 1,000 times less than HIV and less than Hayfever.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    How about a percentage.

    Affects and disables ____ % of population but only get _____ % of funding.

    How is that. It would be quick and would show disparity.

    Any math wizard figure that out?

    Tina
  10. shiso

    shiso Senior Member

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    I think emphasizing the ridiculously small amount of funding in proportion to the prevalence and disability is critical, and I agree that it would be ideal to express that elegantly using numbers in one sentence, without having to refer to context/comparison with other diseases with respect to prevalence and complete disability rates (which I agree may not work in our favor in the ad campaign context).

    But I don't think straight percentages affected and percentage of NIH/CDC funding allocated would be very effective. Using the conservative estimated ME/CFS population at 1 million and the US population estimate of 310 million, 0.3% are affected and the percentage of funding is likely to be 0.0000x% - i.e. my point being two small numbers both fractions of 1% may not make much of an dramatic statement with immediate impact...

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