1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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Interview: Ian Lipkin’s Million Dollar Appeal for Microbiome Study

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.

  1. maryb

    maryb iherb code TAK122

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    @Sasha
    I have done thanks, just makes it harder to do things twice...especially when you been sick all day. No - not looking for sympathy, I'm feeling sorry enough for myself:)
    Izola, aimossy, Firestormm and 3 others like this.
  2. bel canto

    bel canto Senior Member

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    Not bad for day one!
    Izola, aimossy, vli and 4 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Hi Jarod - I think the idea of crowdfunding for ME research has been around for a while now - a couple of years at least - and there have been discussions on these boards about what we could do, even in terms of choosing projects that were already fundraising and selecting a particular one to go for.

    Truth is, we're not very well geared up for that at this stage, and even if we were, I'd be very surprised if everyone was able to agree on a priority. I'm delighted that Dr Lipkin has approached us for help with funding - such a major scientist being interested in our disease is a huge opportunity in ways that go well beyond his actual research. I think we should grab this opportunity while it's on offer.

    Intended by whom? If an undertaking is going to succeed in the ME community it needs wide support and I don't think that being an independent researcher (if by that you mean not affiliated to an institution) is a sign of quality or that you'd get wide agreement on that across the community. Research projects need to stand on their merits. I don't see any evidence that Lipkin is 'boxed in' or 'associated with politics'.

    I think that the lessons that we'll learn as a community about how to crowdfund successfully will be enormously useful and that we'll be able to apply them to other, future projects. I see this appeal as the first of many. I think we're going to find our feet as a fundraising community with this project and that Lipkin's name and prestige is going to help us do that. And after that, the sky's the limit...
    aimossy, vli, Ruthie24 and 3 others like this.
  4. Bob

    Bob

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    Technically speaking, I tend to agree with you on this, Jarod. My personal preference would be for a different research project, such as testing lymph and gut tissues for viruses, and further auto-immune studies. And I think perhaps patients' money would be put to best use by providing seed money for small exploratory research projects.

    However, fundraising requires more than technical details. It requires inspiration and momentum and this study seems to have captured people's imagination, and it seems that there is some momentum behind it. I reckon $1m going to Lipkin is probably better than nothing going to nobody, so I'm going with the flow. And as @vli says, people are free to donate to it, or not, as they see fit.

    Also, as others have said, this study should not be seen in isolation, but the knock-on effects could be huge to have Lipkin continue to research our illness on such a large scale. e.g. Unexpected results might turn up, and Lipkin might do further collaborative studies with other ME researchers, and other researchers might see what Lipkin's doing and start to take ME more seriously, etc. I expect Lipkin will also continue to apply for funds for other ME research projects, and if he gets any interesting results in this study then it will lead to further research.

    Also, if a team of patients get together to organise crowd-funding for this project, then they'll probably carry on afterwards, and will perhaps be able to achieve more funding for further projects in the future. So perhaps it's not perfect, but research never is.

    Oh, and also, many patients really really want to see a gut/microbiome study carried out, by someone like Lipkin.
    Last edited: Feb 12, 2014
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  5. Sasha

    Sasha Fine, thank you

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    I seem to be having a bit of a contrarian streak but I think that there've been far too many small, exploratory projects. I think that's been our curse - lots of small projects that never get followed up. We need a strong lead followed strongly - that is, a likely target (and the microbiome is a likely target) examined in a large, well-conducted study by someone so heavyweight that the findings get a lot of attention. That's what we'll be getting with the Lipkin study.

    I think that's a very important point. Every one of us probably has a pet study that they'd like to see done but we're not going to convince every else to fund it because they've got their own pets! But when a study like this comes along, and lots of people see the potential, enough are willing to fund it because they can see that others will donate in large numbers and that it can succeed.
    Izola, aimossy, Simon and 1 other person like this.
  6. Rich D

    Rich D

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    Donated.
    Izola, aimossy, Simon and 3 others like this.
  7. vli

    vli

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    I agree! :D And I think it's worth repeating that Lipkin's work isn't PREVENTING other research work from happening, nor is it "using up funds" that would otherwise be given to other researchers. Researchers like De Meirleir don't have a study set up "ready to go" as we speak, so how is Lipkin interfering with funding for them or patient support for them? De Meirleir/Chia patients are going to support their own researcher regardless of what Lipkin does--Lipkin's study is not undermining that.
    Izola, Valentijn, aimossy and 2 others like this.
  8. Nico

    Nico Senior Member

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    agree, am curious about a "funds raised thermometer" if you will.
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  9. vli

    vli

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    The only way I can do this for now is to keep asking Columbia for updates--please bear with us!
    On Monday Columbia counted 14 gifts totaling $2935, although those gifts were received between Oct '13 and Monday, so over a much longer period.
    However on Tuesday they received 66 gifts totaling $5312, so as of Tue. the "grand total" is $8247 :thumbsup: :)
    Nico, Sasha, Izola and 3 others like this.
  10. August59

    August59 Daughters High School Graduation

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    If the CDC feels so strongly about the 1 million patients in the US alone, then why don't they get off their ass and help fund the study. They would not have job if we were not paying the taxes that we are. They do work for us as well as the NIH.

    My senator is getting ready to get an ear full about the amount of funding we as patients of an insidious disease where the highest percentage of death rate is caused by suicide. I don't believe this is the case with MS or Asthma, although I have friends with both, and those groups receive 23 to 57 times the amount of funding that ME/CFS receives!
  11. biophile

    biophile Places I'd rather be.

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    Whether or not Lipkin was officially turned down by the NIH is an interesting question.

    When patients complain about a severe lack of funding, it is sometimes claimed that there has simply been a lack of quality proposals rather than a lack of available funding. I am not savvy in the complex politics of grant funding, but I have doubts that this reason alone can explain the severe lack of funding. Something else, such as politics or a lack of will, is also going on.

    Are we supposed to believe that someone such as Lipkin is too incompetent to put together a quality proposal for a promising lead? Obviously application of a grant is no guarantee of success, but still, the reasons for rejection should be explored.

    IIRC, Johnathon Kerr applied for funding repeatedly in the UK and kept getting turned down because a psychiatrist on the panel rated his proposals as poor while everyone else on the panel generally rated them as good enough?

    I think it was Pat Fero who investigated the CDC and NIH funding of CFS and the available funding was often spent on questionable projects which had very little to do with CFS. Not to mention the CDC funding misappropriation scandal.

    There also seems to be a circular problem where researchers are less likely to apply for grants if they know the chances of success are doubtful for whatever reason. But looked what happened in the UK when (chump change) funding was ring fenced, lots of proposals regarded as a "high quality" were soon submitted. So a lot can be said about why researchers are discouraged, including previous experiences of having good proposals turned down for bullshit reasons.

    If the NIH did the same with $25 million or so, no doubt there would be many good proposals too. Researchers should not be held wholly accountable for what gets funded. There needs to be more engagement and encouragement from funding bodies.

    user9876 raises some good points on another thread:
    http://forums.phoenixrising.me/inde...writing-about-me-cfs.28165/page-2#post-429474
    Last edited: Feb 12, 2014
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  12. Nielk

    Nielk

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    Lipkin, in his last public statement to us on the phone meeting with the CDC, announced that he did apply for a grant from the NIH to continue his study and was declined.
    Izola, MeSci, Simon and 5 others like this.
  13. Wally

    Wally Senior Member

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    Hi! Everybody. I have been off line today, but I just wanted to pop in to say that all of the questions and information that people are raising here and on other Forums/social media sites, about fundraising for Dr. Lipkin's research project, as well as others, are being listened to.

    Discussions are ongoing with several organizations right now and I am going to try to talk to Simon, vli and others tonight or tomorrow to sort some of the fundraising details out. My hope is that there will be more definitive information to provide everyone in the patient community about what is being looked at within the next day or two. So hold on to your hats - things are looking very positive to get a fire going under the patient community, the government and the scientific community in a very positive way to really move this illness forward.

    In the mean time keep any of your questions and/or comments coming. It is really important to get these ideas and thoughts out on the table now, so the next steps that are taken will be a reflection of what a broad base of patients would like to see happen with fundraising. P.S. I think you might be surprised to know how many people are watching and listening to what you have to say. ;)

    Wally
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  14. vli

    vli

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    @biophile
    I can't find it in the article itself (fatigued!) but I listened to Simon's recording of the interview several times and I know for a fact that at one point Lipkin answered Simon that he DID apply to the NIH for a grant for this study but was turned down. In short: with respect to microbiome work, neither the NIH NOR the CFI are giving him any money.
    Izola, MeSci, Valentijn and 3 others like this.
  15. Daffodil

    Daffodil Senior Member

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    I wish demeirleir would appeal for funding. I can ask his team where we can donate but I believe wpi is where a lot of the research is taking place. not sure how people feel about donating to them...but from what I have heard about demeirleir's research, I would donate.

    is lipkin going to be studying tissue? if so, then it would be very worthwhile, in my opinion.
    Izola likes this.
  16. Firestormm

    Firestormm Guest

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    Was Lipkin turned down by the NIH for this Microbiome study? Yes.

    See main article here:
    There were some very strange reasons cited by Lipkin for this refusal to fund, and they didn't seem to have anything to do with the quality of the study proposal, which made the whole thing even more weird: at least to me. Nothing nefarious was behind the decision - but the application was turned down.

    It is not outside the realms of possibility that Lipkin will reapply for funding from NIH or from CFI. I think with respect to CFI they have already committed a fair chunk of money to his team but if we, as a community, can also demonstrate we are supportive of Lipkin, then CFI might be more inclined to commit more funds.

    I also agree that if awareness of this Appeal and the support it is (and will) receive from the patient community, is effectively brought to the awareness of Congress and your representatives, then it could certainly provide an opportunity to help tip the balance on future funding allocation for ME, and even help sway the argument in favour of granting Lipkin approval should he reapply.

    Was it Klimas at the IOM meeting recently, who raised the issue of spending on Male Baldness being far in excess of any kind of commitment to ME? I think it was. A useful quote to accompany any letters you might write.

    For me though, I think it is a simple question of: If a scientist of this calibre and with such a team behind him, is prepared to invest in our illness and believes there is good reason to - then why aren't you (i.e. NIH)?
    Last edited: Feb 12, 2014
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  17. Wally

    Wally Senior Member

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    @Firestormm
    Yes, I agree.

    Plans are in the works to get the patient community in a position to make these type of letters/communications have some real impact. This is all part of the overall "fundraising" strategy that is being looked at, so hopefully our efforts can have a resounding "pounding" of thunder around the globe. :balloons:
    Izola, aimossy, Bob and 1 other person like this.
  18. Sean

    Sean Senior Member

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    As a middle aged male completely unfazed by his normal male balding, I say spend the cash on ME research.

    The hair I can live without.
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  19. Bob

    Bob

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    Good points. It's reminded me that, at a CFSAC meeting or the FDA (patient stakeholders conference) meeting Susan Maier of the NIH said that the NIH wanted to fund more good quality research and that ME researchers should go directly to her for guidance on making successful research applications. Perhaps budget restrictions are the only reason for the Lipkin funding being declined, but it would be good to know the details. One of us should perhaps contact Maier to ask why the Lipkin study was declined. Does anyone know if she responds to emails, and would they divulge such information? (i.e. is it worth bothering?)
    Izola, Valentijn and biophile like this.
  20. Kati

    Kati Patient in training

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    It just amazes me when men are bothered by their balding which occurs naturally when women in fact think it's sexy. :cool:
    Valentijn likes this.

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