Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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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. leokitten

    leokitten Senior Member

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    I totally agree with that, but that isn't my argument. My argument is that if the NIH is going to fund only 3 centers for this disease it's a shame to fund one where their research will likely not lead to treatments for another 30 years.

    We've had hundreds of ME papers like that over the past 30 years, showing abnormalities. They have done very little for us so why do I want NIH to give $10 million to someone who is just doing more of that?
     
    Last edited: Oct 28, 2017
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  2. neweimear

    neweimear Senior Member

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    None of us know what he will come up with. He is on our team, looking for answers to this shit illness, that is the bottom line.
     
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  3. neweimear

    neweimear Senior Member

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    How do you know its going to take 30 years? You have no way of knowing that....why not email Dr.Lipkin with your concerns instead of surmising...
     
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  4. ljimbo423

    ljimbo423 Senior Member

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    I couldn't agree more. He might find something ground breaking, little to nothing or something in between, only time will tell. I'm really hoping he finds something substantial and treatable.

    Jim
     
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  5. A.B.

    A.B. Senior Member

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    Many of these previous studies were small, which makes it hard to discover subgroups. Bigger studies could discover subgroups. Identifying one subgroup would be a significant step forward.
     
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  6. leokitten

    leokitten Senior Member

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    Because I read and follow research looking at the microbiome in other diseases. Regarding ME, what are you going to treat when Lipkin finds some very complex and subtle differences between patients and controls? What is it going to tell us that we could actually start working on as a treatment that would be available within the next 5 or 10 years?

    The experimental tools we currently have to look at the microbiome are not very precise and do not give the concrete answers we need to gain actionable knowledge that can start the ball rolling on drug development and clinical trials that will lead to an FDA approved treatment in the next 5-10 years. Looking at the microbiome for answers in ME that lead to treatments is something that is going to take a very long time if it ever leads us to anything, and the experimental tools to do so haven't even been developed yet.
     
    Last edited: Oct 28, 2017
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  7. leokitten

    leokitten Senior Member

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    No he won't, not from this one study he won't. One broad study looking at something as complex as the microbiome is never going to do that, if people here on PR think that it's not reality.
     
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  8. leokitten

    leokitten Senior Member

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    Multiple previous papers have identified subgroups and to date have any of these been a significant step forward? No, not really.
     
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  9. Butydoc

    Butydoc President

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    It will be interesting to see if the phase 3 trial of Mella/Fluge will identify sub groups that will most likely respond to drugs that treat autoimmunity. Presently, it is just an educated guess who might respond. My personal choice used my family history of ME/CFS and autoimmunity to make a decision. Fortunately it appears to working well for me.
     
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  10. leokitten

    leokitten Senior Member

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    I want to mention in case anyone has forgotten...

    If we already had a clear drug target for ME today, meaning we had amassed all the research and knowledge to show a very significant and treatable target in ME, then it would still be many years until we had a drug treatment available to us patients.

    If we could repurpose an existing FDA approved drug for another disease we would still need to go through phase II and III clinical trials and FDA approval which would likely take 10 years. For an existing and safe non-FDA approved drug add to the 10 at least another 5 years, and to develop an entirely new drug for the target likely add to the 15 at least another 10 years. And all the above timelines assume a large pharmaceutical company is driving this because it requires an insane amount of cashflow to accomplish at the rate.

    So I apologize if it upsets anyone, but I am just speaking the truth and the reality is that a broad microbiome discovery project, regardless of size, is not going to lead to any treatments for a very, very long time (decades).

    To date, only a one or two companies have attempted to clinical trial microbiome targeting biotherapeutics and only for illnesses as low-hanging and straightforward as C. difficile infection and their drugs have failed miserably. The FDA also still has no idea how they are going to deal with approval of this new drug treatment modality, its the Wild West still and for the government that means additional bureaucracy and years of delays.

    Ian Lipkin's work is going to forward Ian Lipkin's career and recognition way more than it will get us significantly closer to any treatment. Studying the microbiome is a hot new research field now because we know very little about it, and because of that something the NIH is interested in. From a new research field you will not get to drug treatments quickly.

    Trust me I'm all for it from a research perspective to our further our basic understanding of human physiology and connection with disease, but let's not kid ourselves it will be forever until an FDA approved treatment comes from it for ME.
     
    Last edited: Oct 28, 2017
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  11. leokitten

    leokitten Senior Member

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    I totally agree, but this work wasn't what I meant from my post. Fluge/Mella discovered this subgroup doing clinical trials of a drug for approval for use in ME. I welcome getting money from the NIH to do that.

    I meant the countless discovery research studies finding ME subgroups. In the past 30 years none of these have been a significant step forward. They all found wildly different subgroups and only served to increase complete and total confusion about this disease which has a terrible effect when you want big agencies like the NIH to know ME is real and fund it. Fluge/Mella's phase III I believe will have a major effect on funding from the NIH if results are similar to the previous trials.
     
    Last edited: Oct 28, 2017
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  12. aimossy

    aimossy Senior Member

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  13. A.B.

    A.B. Senior Member

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    We haven't really identified any subgroups. Different levels of some molecule or something like that isn't enough to really delineate subgroups. As example, being able to say for sure that in a portion of patients the problem is some inflammatory process in the gut would delineating a subgroup in my view. The Rituximab trial will probably soon confirm that a B cell autoimmunity subgroup exists.
     
    Last edited: Oct 29, 2017
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  14. Londinium

    Londinium Senior Member

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    Not sure if this has been posted elsewhere but the Jackson Lab CRC has started a blog: https://jaxmecfs.com/
     
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  15. Wally

    Wally Senior Member

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    @Londinium - Did not see this blog in any recent thread, so sent your suggestion to a moderator by clicking on the “Report” button and asking if your link to the blog and the information about the grant(s) coming from Jenny Spotilla’s blog could be put into a separate thread.

    Maybe if the other grant recipients have a specific place online where they will be posting information about their research project, those links can also have their own thread. The new thread could also include a reference to this thread, so the information in this thread can still be accessed without having to search for it.
     
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