The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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ME/CFS Collaborative Research Centers & Data Management Center Announcements

Discussion in 'General ME/CFS News' started by AndyPR, Sep 27, 2017.

  1. A.B.

    A.B. Senior Member

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    Can you tell us more about these reviewers?
     
  2. Jesse2233

    Jesse2233 Senior Member

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    I've drafted this petition to Francis Collins, Walter Koroshetz, and the NIH. Let me know your thoughts...
    Edit:
    I have posted an updated draft for a petition to the NIH here. Please take a look and give me feedback. I want to make sure it balances gratitude to the NIH for the funding increase and respect for the respects that won with urgency and a strong rationale for funding Dr Davis
     
    Last edited: Sep 28, 2017
    Mary, Rrrr, Nickster and 9 others like this.
  3. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Ron says: Our grant had a number of senior scientists at Stanford, including myself, Mark Davis a world renowned immunologist, Mike Snyder, Chair of Stanford Genetics dept, ranked the best genetics department in the world, and expert in big "omics" data, Craig Heller, a world expert in exercise physiology and fatigue, William Robinson MD, expert in autoimmune and Lyme's disease, Lars Steinmetz, an expert in complex genetics and mitochondria, as well as scientists from other universities, including, Robert Naviaux, USCD, world renowned expert in metabolomics and mitochondria physiology, Curt Scharfe, Yale Univ, expert in mitochondrial genetics, Wenzhong Xiao, Harvard, expert in bioinformatics and big data analysis, Robert Phair, CEO of Integrated Biioinformatics, Inc, which models complex biochemical pathways, Lucinda Bateman, of the Bateman-Horne Center, one of the foremost ME/CFS experts in the country, and Susan Levine, another well-known ME/CFS physician.

    One of the major complaints was that I had no publications on ME/CFS. One of the criteria of this RFA was to bring new people into the field, which is impossible if reviewers exclude investigators without prior publications. The team I put together would be phenomenal for this field. All of us have experience and a myriad of publications that are directly relevant to the study of ME/CFS.

    The review complained that our institutional environment was "mediocre". The Stanford office that reviews all Stanford grants told me that they had never seen a Stanford rating anywhere close to that low in their entire history. It's absurd to think that Stanford is not an excellent institutional environment.

    They argued that my involvement with OMF constituted a conflict of interest. In fact, our interests are aligned, not in conflict! This is mystifying given the fact that the RFA required applicants to work with an NGO.

    They didn't like our nano needle instrument. They said it's probably only measuring cytokines, but there's no data for that. They said it wasn't certified as government-approved for medical use with patients. This was mystifying because one of the aims of the grant was to develop the nano needle for medical use!

    They complained that Janet was part of the community outreach part of the grant because she is my wife.

    They said I had a conflict of interest because my son has ME/CFS.

    They didn't like it that I had put out videos with preliminary results and ideas to the patients on PR and elsewhere because it was unpublished and not peer-reviewed.

    There were a number of other criticisms that were mostly about scientific issues, that were mostly wrong. For example, we were proposing to use IPS cells, which they said wasn't validated, but in fact, it's used extensively and it's being used in the NIH Intramural study!

    This is not a complete list, but I think you can get the picture from these examples.

    We of course will continue to write grants until NIH funds us (we are submitting an R01 grant on Oct 5), and we will continue to actively work with OMF to raise private donations, but this is definitely a big setback. I was especially sad on Monday when Whitney was communicating with us on ativan and he cried in pure anguish, knowing that we can't help him as fast as I'd like to.
     
    Dufresne, mango, justy and 52 others like this.
  4. Alvin2

    Alvin2 If humans were rational...

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    i would mention its prevalence rivals these conditions (get some HIV/MS numbers to add)
     
    MEMum and Jan like this.
  5. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    This is a touchy subject for Ron to be talking about, but some other people might be able to tell you about them. Ron only wants to comment about the science, not about the people.
     
    mango, justy, Skycloud and 20 others like this.
  6. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I'm extremely gutted. Yes, he is submitting another R01 on Oct 5, but if he gets it it will be months till it's funded. Watching Whitney and you all suffer makes it nearly unbearable to think of waiting longer. Linda at OMF is working like crazy to get funders. And yes, Ron is bummed, but it isn't stopping him for one minute. Well, maybe for a minute. He was pretty disappointed.
     
    mango, justy, Skycloud and 23 others like this.
  7. Alvin2

    Alvin2 If humans were rational...

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    Sounds like they have a personal grudge against Dr Davis. Thats not going to be easy to deal with because in that case its not about technical or logistical issues despite their "explanations", its about something else. But what or why is the question.
     
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  8. RuthT

    RuthT

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    Really thinking of you all. right now. So sad if #mecfs17 impacted the decision. That day gave me the first great hope for an enlightened approach to excellence in research. An insight into the work of the brightest & best researchers combined with compassion for patients and informed by personal experience. A real tragedy if that is seen as a conflict when the science is top quality. A real problem if medical research has no humanity.
     
    justy, MEMum, TeresaBCN and 11 others like this.
  9. Neunistiva

    Neunistiva Senior Member

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    @Janet Dafoe (Rose49) A lot of us feel gutted right now. Those excuses are so unconvincing it's like they weren't even trying. I really don't understand what's going on with this illness.

    Sounds like they have a personal grudge against finding treatment for ME/CFS.
     
    mango, Chezboo, drewmaster and 14 others like this.
  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    No, we don't think #mecfs17 impacted it. We wished they could have seen it, but they probably reviewed the grants before that happened. And the reviewers probably aren't in the loop to have watched the live-stream or know it's on YouTube.
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Cytokines really...? Monotoya showed mild patients have lowered cytokines and Ron's assay still identifies mild patients

    And Maureen Hanson has a son with ME for Christsake. That doesn't make her biased. Why fund her and not Ron? (Not saying she doesn't deserve it, because her work is great as well!)
     
    justy, MEMum, Countrygirl and 26 others like this.
  12. A.B.

    A.B. Senior Member

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    The nanoneedle sensor is our best hope for progress. If everything works out it would be used for diagnosis and finding effective drugs. These reviewers were really biased.
     
    MEMum, Chezboo, srallis and 14 others like this.
  13. Alvin2

    Alvin2 If humans were rational...

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    Thats old news but they did fund 3 others (finally)
     
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  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I can't believe this ...talking to patients, being open with the community and having a vested interest is a bad thing?.

    Sounds as contrived as the UK. This was our biggest opportunity to get to the heart of the problem rather than skirt around the periphery of symptoms.

    I would say publish, but they will just find more excuses. It's amazing how a handful of abusers of power can have such a devastating effect on so many sick people.
     
  15. RuthT

    RuthT

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    Thank you for responding, and so relieved that #mecfs17 wasn’t an issue. My heartfelt thanks for all you, Ron & others are doing & the way you are doing it. And for keeping on keeping on.
     
  16. Alvin2

    Alvin2 If humans were rational...

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    In light of their "reasoning" you may want to adjust your letter. Its 4am here so i can't give much advice on how right now
     
    Jan, BurnA, Joh and 1 other person like this.
  17. necessary8

    necessary8

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    Oh my god, I was mad before, but this is just pure bullshit on so many levels.

    I say it's time to do a full-on storm of the NIH. Petitions, emails, social media, everything. I believe NIH's attitude towards Ron and Stanford is currently the single biggest obstacle in us getting back to health as soon as possible. So let's do something about it. Let's make an organized effort to pressure them.

    First, here is their facebook post about it - https://www.facebook.com/nih.gov/posts/10155507737816830 I suggest we go comment on it.

    Then we go tweet at:
    https://twitter.com/NIHDirector - Collins
    https://twitter.com/nindsdirector - Koroshetz

    Then we email them at grantsinfo@nih.gov and call them at 301-496-4000

    But be *polite*. Don't insult them. Thank them for spending money on ME/CFS research. But also insist that we patients want Ron Davis and his team to get funded most of all. That we believe it's the best team to solve this illness, far above the rest. That we are really disappointed this RFA didnt go to them. That we would like them to get as much funding as they request. Again, be polite about it. Polite, but firm.
     
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  18. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I just have to tell you how much I loved reading that sentence!
     
    justy, MEMum, Countrygirl and 8 others like this.
  19. Sasha

    Sasha Fine, thank you

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    Hi Jesse - AFAIK, Dr Davis hasn't yet developed a diagnostic blood test for ME/CFS. I know he's trying to develop one, but I don't think it's been validated, and it's unknown how specific and sensitive it is. I think it's important not to overclaim.

    Is that correct, @Janet Dafoe (Rose49), or am I behind with things?
     
  20. necessary8

    necessary8

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    Oh my, and here I was being star-struck that you liked my post. ^ ^ But I meant it, its like the whole time since you sent the application, they spent holding meetings and debating to come up with the most bullshit reasons to decline it.

    The one question I want to ask, because I think this is important - are the reasons they gave you supposed to be public? Are we allowed to reference them in our emails etc to NIH? Or are we supposed to pretend we haven't heard them and focus just on the fact that we think Ron's team is best?
     
    Last edited: Sep 28, 2017
    simeyss and Jan like this.

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