1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. Hope123

    Hope123 Senior Member

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    Yes, it's vicious circle and the same excuses every year for the past 20 years. If the government wanted to break the cycle, they could.....it's all about will and interest.
     
  2. BEG

    BEG Senior Member

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    And we can't get approved drugs because there are no biomarkers, yet the experts say there are biomarkers. And on and on and on . . .
     
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  3. lnester7

    lnester7 Seven

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    proposal: Does anybody knows how to fill out grands??? we can get a class and volunteer on the centers to request proposals. We can swamp NIH on proposals and something maybe will get approved. I heard the centers are discouraged to do the work. Maybe if we advocates / patients provide the help we have better chance.
     
    SpecialK82 likes this.
  4. SpecialK82

    SpecialK82 Senior Member

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    Inester, I'm not sure if I totally understand what you are saying, but I think I agree, lol ;)

    I like this idea proposed to us patients by Nancy Lee, I have thought of it often:

    - patients go to the NIH website "Office of Extramural Research"
    - learn about all of the funding opportunities (this will take awhile, it's complex)
    - advocacy community can work with the researchers and partner with people at universities to let them know about funding at the NIH

    This is a huge task, but I would love to see us set up and advocacy group to do just that. I would also like us to keep track of each existing research project, source of funding, when data should be published, etc. And then have a complimentary list of funding opportunties, and actually try to match these up to a degree. I know this can get very complicated but we don't need to start from scratch.

    We probably could ask for some sort of NIH "class" for us if we really pushed it. At the very least, I would think that the CAA could guide us and give this group some lessons, they deal in that world everyday......
     
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  5. SpecialK82

    SpecialK82 Senior Member

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    Another idea - go find the movers and shakers in the Autism community and find out their successful strategy to get more funding
     
    lnester7 likes this.
  6. Andrew

    Andrew Senior Member

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    It's what Mary Ann Fletcher said. She said that researchers stopped applying because they make it extra difficult. She also pointed out that there are nonexperts on the committee. And unless I misunderstood her, she quit the review committee because it was too complicated to get things approved.
     
  7. Andrew

    Andrew Senior Member

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    I agree. The combination of words and placards made for a powerful presentation.
     
  8. Hope123

    Hope123 Senior Member

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    Yes, I hope they listen to her. She has the most CFS research experience of anyone sitting around that table right now even if she is somewhat soft-spoken. I also hope they listen to Dr. Levine, the only truly experienced CFS clinician at the table as far as I know. At least Dr. Dimitrakoff was honest and humble about his expertise in CFS, not so sure about other some other people at the meeting.
     
    BEG likes this.
  9. Hope123

    Hope123 Senior Member

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    I think patients have a role in helping out researchers but having successfully applied for grants in the past, it is a time-consuming complex process that can take months. And you really have to know the science well. Chances of success are around 20% generally (all fields, not just CFS) and scientists are NOT paid for the time they spent writing/ finding collaborators/ filling out forms/ making a budget so they're doing it on their own time, squeezed between work, family time, other obligations.The 80% of grants that don't get funded aren't necessarily bad either; at this level of the game, good ideas get thrown out all the time for lack of funds in all science fields.

    The US grants funding process is not very efficient in my mind and was a reason I left academia years ago. It didn't pay well ( the private sector paid me 50% more) and, even if I was willing to get paid less, it was a very unstable way of trying to make a living relative to other opportunities I had. Grants usually last only a few years. In some countries, scientists are given a stipend to live on aside from grants but not the US. I think Dr. Lee is being unrealistic here and putting too much responsibility on the shoulders of sick people. Instead, it should be Dr. Maier's job as ME/CFS Trans-NIH Working Group Director to help researchers find opportunities -- what are we paying them for with our tax dollars?

    Patient's biggest bang for their low energy levels might be visiting/ calling/ educating their local Congresspersons about ME/CFS and asking for more funding. A one-time visit doesn't do it; you have to establish a relationship. Best way to get to a politician if you don't have money but have some time and energy -- volunteer for their office/ campaign. Political pressure and getting to know the legislative staff works for other groups.
     
    SOC likes this.
  10. Andrew

    Andrew Senior Member

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    At least one speaker made a big deal about activism, and how the autism community did it so all we have to do is duplicate their errors. But what this overlooks is the culture at the CDC, and how is biases the data via selective omission and misrepresentation.
     
  11. alex3619

    alex3619 Senior Member

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    There was also a lot of noise about how effective activism was. Which meant to say, how far activism fit with the committee speaker's ideas of activism. We have made progress, we are learning, the CAA for example has quite a lot of research it is assisting. Generally though its failing, which was also explained yesterday. If we cannot get more researchers interested, we fail on the research front (which is only one of several advocacy fronts, though the one that leads to a cure and so the most important).

    It is clear to me that, aside from misinformation about militancy from the UK media, the primary problem is general attitudes, with a secondary problem of academic attitudes. Several of the committee members (don't recall names) yesterday spoke about funding opportunities for grad students etc. Yes there are opportunities, but the impression out there is there are no opportunities and research in CFS is a career death - some people have directly said that over the years.

    To succeed advocacy must do at least four things:

    1. Accelerate research.
    2. Put a brake on disinformation, including psychologization of ME.
    3. Improve medical treatment.
    4. Assist patients being abused by the medical or other systems.

    We are probably most successful in that order. I do note the ICC treatment primer is now out, so that will help with item 3.

    Bye, Alex
     
  12. WillowJ

    WillowJ Senior Member

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    that's kind of six of one, half a dozen of the other to me... chronic pain consortiums tend to be about central senitization, pain focusing, biofeedback, and a lot of such nonpharmacological management which frankly many of us learned on our own and is really the lesser part of our concern. also they tend to be of the type that lumps various conditions together as if they had no significant differences (it's hysterical females, what can you expect)

    but on the other hand, anything that is funded and organized that we can sort of join up with and get attention and funding from, that we could use for our priorities, is a good thing to me.

    pain is not the defining feature of our disease but it is a prominent one for many of our patients. and any 'chronic pain' budget that names us, I expect we could use for disease biomarkers or whatever.
     
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  13. WillowJ

    WillowJ Senior Member

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    if I was hearing the right Andrew (I think I recognized your voice) you did well. Thanks :)
     
  14. Valentijn

    Valentijn Activity Level: 3

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    Usual BS about the definition of CFS today, but some panel members did a great job grilling the CDC woman. It's just amazing how nervous some of the CDC and NIH folks are ... that one even dropped her pen after stuttering a bit at the end :)
     
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  15. Valentijn

    Valentijn Activity Level: 3

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    Oh good. Social security offices are willing to consider our cognitive and behavioral problems. :cautious:
     
    BEG likes this.
  16. BEG

    BEG Senior Member

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    This disability guy is doing an excellent job explaining their position. From one who has gone through the system, take his comments to heart. They are so true. Keep that daily diary and so on.
     
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  17. Valentijn

    Valentijn Activity Level: 3

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    It's weird how little the SSA seems to understand about ME/CFS. Benefits being awarded secondary to "other affective disorders", brain damage, and HIV? Funny how those people are never on the ME forums looking for help with ME symptoms :p He keeps saying "chronic fatigue" and I think he means it.
     
  18. BEG

    BEG Senior Member

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    Don't forget to put 99.2p on your disability application.
     
    Valentijn likes this.
  19. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I was just reading their description of 99-2p and it looks decent. OI and muscle muscle issues, neurocognitive, etc. But I think they person that suggested we've given up on getting benefits for CFS and go for psych diagnosis instead was probably right.
     
  20. madietodd

    madietodd Senior Member

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    BEG, I came in when he was answering questions. Could you give a recap of the comments we should take to heart? Thanks!
     

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