Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Dr Nath's intra-mural study at NIH is currently recruiting

Discussion in 'Active Clinical Studies' started by Kati, Dec 9, 2016.

  1. Kati

    Kati Patient in training

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    They are collecting data at a rate of 1 patient a week if I am not mistaken and they have just started. Then they have to process all the samples, and performa analysis of the data. We are likely 2 years away from publication. This is an estimate from my point of view and I may be wrong.
     
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  2. BurnA

    BurnA Senior Member

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    I think Nath mentioned 3 years from start or something like that, at one point. Possibly during his webinar.
     
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  3. Tuha

    Tuha Senior Member

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    Long way to go. :-( Do you think they will release partial data earlier?
    It´s always interesting to have at least some partial informations during the waiting periode. Look for example at CDC CFS studies. I think they are doing their studies already for 5 years and we dont know anything about. It´s very frustraiting,
     
  4. Kati

    Kati Patient in training

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    Probably not @Tuha since this is the way science works, and in most cases scientists do not discuss their results before publication. However we have other teams working hard, and we should expect publication from the Davis group by the end of the year, and results from the Norway study by early next year. And I am sure there are others who have something in the works.
     
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  5. viggster

    viggster Senior Member

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    I'll try to get more details from the scientist. She was very excited about describing it and was talking quickly so I missed a lot of what she said.
     
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  6. viggster

    viggster Senior Member

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    Today I asked one of the researchers about timeline and he said they'll be releasing results as the study goes along. That is, they don't plan to wait until the very end to start publishing. The first stuff out will probably be the animal model they're attempting to develop. The brains-in-a-dish experiment (blood cells turned into neurons) could also be early out of the gate. Maybe in a year or so, but who knows. If any of the 30 or so scientists working on the study finds stark early findings, they may be eager to get it out sooner. I am convinced this is not business-as-usual at NIH. Avi Nath had to make a split-second decision when Collins asked him to be PI during a meeting. And then Collins gave him a month to put a protocol together. I would not be surprised if that is some kind of NIH record outside of emergency protocols like Ebola. Intramural protocols can often take 6 months to a year or more to come together.
     
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  7. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yaaay! It is wonderful to get information as it develops! This actually seems like a kindness they are doing us. Please tell them, "thank you" from me. And thank you, again for giving us updates, @viggster, I really appreciate it.
     
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  8. RYO

    RYO Senior Member

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    In regards to use of mass spectrometry on CSF samples, I was told they are going to wait until they have collected all samples then run them as a batch. My guess is that it will take them at least 80 weeks. Part 2 of the study will not even begin until 6 months from March of 2017. Overall, I think it's difficult to predict which part of intramural study will uncover interesting pattern that is unique to ME/CSF patients. Dr Nath also mentioned the most difficult part of CSF study is data analysis portion.

    After having some time to reflect, I have cautious optimism.
     
  9. viggster

    viggster Senior Member

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    Certainly. I've been trying to think of other ways to communicate about the study and how to get the word to as many patients as possible. Look for articles in the next few days on national news sites. And the team is being very open about everything they're doing. They're now talking with Staci Stevens and I gave NIH my data from the 2-day CPET I did with her. This is a big positive sign IMO. When Dr. Collins came to talk to me he wanted to know how the patient community felt about the study. I told him I didn't have any surveys, and that the early communications problems reinforced decades of mistrust, but that I had also heard hopeful messages from many patients.

    One long-standing criticism of NIH across many fields is their sometimes lack of faith in results from outside their gates. So if they have to reconfirm findings from others in order to really believe them (like lowered anaerobic threshold on second day of CPET), so be it.
     
    Last edited: Apr 29, 2017
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  10. Comet

    Comet I'm Not Imaginary

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    Thanks so much @RYO and @viggster, both for going through this testing, and for updating us! :love:
     
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  11. Nielk

    Nielk

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    Interesting that Collins wanted to know how the community felt about the study. If he was really concerned, he would have listened to the community's outcry about removing Walitt and the other very problematic NIH investigators working on the study. If he really cared, he would have listened to the advocates and patients who were asking for a voice in the design and execution of the study. These issues were outlined here and were sent to Collins - with no reply from him. If he was concerned about the patients, he would have acted upon our outcry before Shorter was to appear and lie about ME to NIH investigators.

    It's the actions that matter - not a smile on a picture.
     
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  12. viggster

    viggster Senior Member

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    Coming to my room and talking to me and another patient for a half hour is an action. Pushing his people to design the deepest biological investigation of CCC ME anyone has ever heard of (please correct me if I'm wrong) is an action - a big one.
     
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  13. Nielk

    Nielk

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    Collins came to visit with you because he know you. You used to work there.

    The rest of us don't even get a reply to our calls or letters.

    As far as the study, there are still problems with it and because of the lack of transparency I have no faith in it. I hope to be proven wrong.

    The bottom line though is that this study is just a drop in the bucket. This disease has been grossly underfunded for decades including the eight years when Collins was calling the shots.

    We have abled private investigators who can't get proper federal funding. Collins is the one pulling the strings. The fault of this ongoing malfeasance falls in his hands.
     
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  14. viggster

    viggster Senior Member

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    You have just revealed that you have no idea how NIH external funding works. The NIH Director does not "pull the strings" when it comes to the thousands of grants the agency gives out every year. Every of the 30 or so institutes at NIH has a director and a big bureaucracy, and review panels, and special emphasis panels, and executive committees, and on and on and on. The idea that one man controls a $30 billion budget where tens of thousands of grant decisions are made every year is ludicrous. The only money Collins directly controls is called the Directors' Budget (or something like that) and he gave funds from that pool to the new RFAs.
     
    Last edited: May 1, 2017
  15. Nielk

    Nielk

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    Right. That is why you wrote the open letter to Collins in Washington Post about NIH sparing a dime for you?

    There is plenty that Collins can do - if he wants. He can start by placing ME in a proper institute. He can speak to the congressional appropriation committees about the need and urgency to allocate substantial funds for ME - like he did two years ago about the need to totally eradicate AIDS.

    He has initiated and allocated NIH funds to different choice projects by taking those ideas to Congress.

    Collins has huge influence as to where the funds are being allocated. He might need congressional approval for large scale changes, but we have not heard him mention once the plight of the disease ME at any of his NIH Congressional Appropriations meetings.
     
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  16. Silencio

    Silencio Senior Member

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  17. Cheshire

    Cheshire Senior Member

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  18. John Mac

    John Mac Senior Member

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    I and many other ME sufferers will be long dead before then.
     
  19. RYO

    RYO Senior Member

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  20. viggster

    viggster Senior Member

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    The slow pace is extremely frustrating, I hear you there. I think there should be concurrent clinical trials with Rituximab and other drugs going on with this observational study. It's so hard to bootstrap research capacity. The Congressional action day coming up on May 17th in DC could help, but it's hard to get Congress to earmark funds and direct NIH to do certain things with such a small and scattered advocacy movement.
     
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