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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Preliminary news from Lipkin & co

Discussion in 'General ME/CFS News' started by Marky90, Dec 26, 2015.

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    "Preliminary evidence suggests that levels “X” and “Y” metabolites and, at least, one immune protein are significantly altered in ME/CFS. (Lipkin embargoed this information pending publication of the paper. One of them is highly unusual.)"

    - Then Lipkin made his bold declaration “We’re going to solve this in three to five years”, with a big proviso. Provided the resources are made available, he believes science can crack ME/CFS fairly quickly-

    http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

    I LIKE the sound of that preliminary evidence. Remember reading that Whitney Dafoe had some metabolite values waay off.
     
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  2. SB_1108

    SB_1108 Senior Member

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    Also of importance for those with too much brain fog to read the article...

     
  3. adreno

    adreno PR activist

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    Yeah, that's pretty cool :whistle:

    Edit: take that scalp, Lipkin!
     
    Last edited: Dec 26, 2015
  4. Yogi

    Yogi Senior Member

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    This is a very good article. Well Worth reading.

    And remember you can triple your donation before end of year.

    Triple Your Support! – Between now and Dec 31 triple your support for Ian Lipkin’s work with the Simmaron Research Foundation (SRF). A generous donor is offering to match $2 for every $1 donated before Dec 31. The funds will support the SRF’s collaborations with Drs. Ian Lipkin and Mady Hornig at Columbia University.

    - See more at: http://simmaronresearch.com/2015/12...-fatigue-syndrome-mecfs/#sthash.pyPGSzfH.dpuf
     
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  5. SB_1108

    SB_1108 Senior Member

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    Ok after re-reading this article several times, I have a couple of questions...

    Maybe its too early to speculate but does this mean that Dr. Lipkin's microbe study has not found any pathogens? Or would the presence of fungi be a potential finding of his analysis?

    Second, could someone please explain metabolites because "x and y metabolites" sound like such vague terminology to me?
     
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  6. BurnA

    BurnA Senior Member

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    This is certainly a nice Christmas present. Let's hope they get all the funding they need.
    It is amazing to have the likes of lipkin researching this, gives me hope.
     
  7. A.B.

    A.B. Senior Member

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    It's vague since the study hasn't been published yet. I think it just means that he has found evidence that some vital processes in the body are altered. This could be very uninteresting or very interesting depending on what is disturbed, how much, and in what percentage of patients.
     
  8. lansbergen

    lansbergen Senior Member

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  9. Gijs

    Gijs Senior Member

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    I like Professor Lipkin very much but i think he's a little too optimistic. ME/CFS will never being solved because it isn't one disease. The patiënts from Peterson (bloodsamples and spinal fluid used in his study) are from a specific subgroup and is not representative for all ME/CFS patiënts.
     
  10. BurnA

    BurnA Senior Member

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    Maybe you are a bit pessimistic ?
    I think we need to give lipkin some credit here - I don't think any of us know exactly what he is doing but his track record speaks for itself. I am sure he is smart enough to know how to conduct an experiment without our advice.
     
  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Gijis does have a point though, research is bound to be easier when we finally manage to break down the likely subgroups.. That being said - based on the Haukeland-studies, I think the "variant of an autoimmune disease"-group is pretty big.
     
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  12. BurnA

    BurnA Senior Member

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    Yes. I don't think ALL patients will ever fit the same profile but hopefully between the work in Haukeland and in Columbia University most patients will fit a profile. It seems there are several studies ongoing so even if one studty is using a certain patient group not all studies are using the same group so different sub groups can be identified.
     
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  13. Deltrus

    Deltrus Senior Member

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    I also think it is quite possible that ME/CFS is mostly one disease. I have very light CFS, with no viral symptoms. Yet, when I took a combination of antibiotics flagyl + bactrim, I experienced the extreme CFS that many people here suffer from from. I got bad viral activation and severe fatigue after exercise. Also, I got a very sudden running out of my energy after exercise, where normally it is only a "soft" barrier. I felt like after a certain point, I just HAD to lay down. Normally I feel like I have to lay down, but I can fight past it, I just feel very miserable. There was no fighting on those antibiotics.
     
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  14. Navid

    Navid Senior Member

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    when will lipkin's paper be published? will any of his findings have actionable treatments sooner than 3-5 years....off label usage of drugs...supplements that impact the protein/metabolite issues?

    3-5 years is an awful long time to wait when you have 0 quality of life.

    thanks
     
  15. halcyon

    halcyon Senior Member

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    It would be nice to see a recording of the actual talk because I get the feeling that much of this article is Cort editorializing.
     
  16. Bob

    Bob

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    Dr Lipkin is carrying out metabolomics and proteomics studies, as part of the overall research program. It's looks like he may have found something interesting in relation to unspecified metabolites and at least one immune protein, but cannot say more about it.
     
  17. Bob

    Bob

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    Dr Lipkin doesn't tend to reveal much before publication. The most we can expect is hints.
     
  18. alex3619

    alex3619 Senior Member

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    This is deliberately vague. The information is embargoed, which means it will not be released till after publication. That publication is something to look forward to.
     
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  19. alex3619

    alex3619 Senior Member

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    The evidence suggests, but does not prove, even ME is two different diseases. However there is another way to look at the evidence. Many diseases have multiple manifestations, and which way the disease manifests can be based on things from pure chance to genetics to comorbid conditions or the presence of specific pathogens.

    CFS when strictly defined is similar.

    CFS when loosely defined may be dozens or even hundreds of different diseases. Its a wastebasket diagnosis.

    However its also possible that what really should be discussed is ME is at least two different types of disease with similar symptoms. For example, one type might be autoimmune, one might be EDS complications, and so on. There might be a wide range of EDS and autoimmune diseases that predispose or trigger ME. In time we will figure this out.
     
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  20. wastwater

    wastwater Senior Member

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    Does anyone know when the full paper is released,thanks
     
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