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....
Discuss the article on the Forums.

Lipkin's Microbiome Research -- new or old topic? (split thread)

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Violeta, Feb 16, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    She was calling it "chronic fatigue", not CFS. While CFS can easily be understood to mean ME/CFS, CF is a different matter as it has a completely different definition and is a symptom rather than an illness. For the sake of clarity, it's very problematic when someone repeatedly says "chronic fatigue" when talking about the illness, as it's hard to figure out if they mean the illness or the symptom.
     
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  2. vli

    vli

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    Another good reason not to just say 'chronic fatigue' is that the letters actually stand for Cystic Fibrosis in the patient community, a completely different condition altogether.
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    No - because they are BAD for you! We want to make people better, not worse. :p
     
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  4. Daffodil

    Daffodil Senior Member

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    wpi campaigns all the time..the KDM/Lombardi work is done there..isn't it?

    we may as well stop wishing scientists will all call eachother to share knowledge and collaborate...it won't happen
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I believe that they are researching through grants, not from WPI fund-raising--though obviously I haven't seen the books!

    Many of the docs who are not collaborating in open studies and partnerships, are collaborating through on-going conversations. This is heartening! :)

    And yes--we need all the research we can get, no matter who the principal researchers are and how they get funding.

    Sushi
     
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  6. SOC

    SOC Senior Member

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    Not true. Scientists researching our illness have done a more than usual amount of collaboration and sharing knowledge. Witness both public conferences and several researcher-only conferences.

    It is true that scientists have different areas of interest and research. That's good, we want a variety of approaches because we don't know where the final answer is going to come from. Researchers work in the area in which they're trained -- immunology, infectious disease, systems analysis, whatever. I'm fine with researchers working within their area of expertise. That's where they're going to make the most impact.
     
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  7. Daffodil

    Daffodil Senior Member

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    well lets hope lipkin finds something the others didn't.
     
  8. SOC

    SOC Senior Member

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    Yes, let's hope so. Let's hope other researchers get money to do their research as well. The more the merrier!
     
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  9. August59

    August59 Daughters High School Graduation

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    My opinion, being a patient, is that this looks like a very promising avenue to approach. One sentence made the whole study seemingly insignificant to the majority of the research community. If it had read that "80 out of 100 patients", instead of "8 out of 10 patients" would have made an extensive difference in the perception of the study when presented to the scientific/research community. Probably even 40 out 50 would have made a drastic difference since the study samples were intestinal biopsies, instead of blood samples.

    This just an example, in my opinion, of how the trend has been with ME/CFS studies since I was diagnosed in 2006 after being ill for 3 years prior. The funding has just been so poor or non-existent that even good valid studies don't carry any clout due to the extremely low "numbers" involved in the studies, but we are at the point where we have to take what we can get!

    This study should definitely get more funding for a larger cohort so that it can get the recognition that the study, researchers and we as patients deserve. This would be a good study to get replication on as it has potential to move toward a possible diagnosis or treatment.

    I also don't have any negative feelings toward the WPI because the proof is in the pudding and I don't care where the pudding comes from. I'll gladly donate a biopsy from any part of my body (well almost any part:jaw-drop:) for any study that will potentially advance the knowledge of a disease that has stolen the last 10 years of my life!

    I'm throwing out this question because I don't know what the full detailed study states for Dr. Lipkins "Microbiome Study", but is there as possibility that the "Microbiome Study" could attempt to replicate this study? Or are we talking about an endoscopy, instead of colonoscopy/sigmoidoscopy?

    Prayers and wishful thinking,
    Jerry
     
  10. vli

    vli

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    @August59, please see the original article thread for details of the study. I wanted to include paragraphs from that first post in this reply, but can't because that thread is separate.
     
  11. Sasha

    Sasha Fine, thank you

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    Hi Jerry - it's neither - it's faecal matter collected in a special cup to give a sample of the gut microbiome.
     
  12. vli

    vli

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    My question is: has KDM told his patients about any one particular HERV that he finds is being expressed? For a specific pathology to be the result, like PEM, there must be a specific causal pathway. If ME is caused by HERVs, is it just one particular HERV that does it? e.g. it can't be HERV-W activation, which they hypothesise for MS. There must be a reason why some people get ME and others get MS.

    Thank you for any help/explanation
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Genes? It seems to be the case that it's common for ME sufferers to have family members with other autoimmune diseases. If they have specific HERVs in common, they may however react differently to them due to genetic differences. So they may have in common a genetic predisposition to autoimmune disease, but also genetic differences which mean that the autoimmune disease is a different one, i.e the autoimmunity manifests itself differently, thus attacking different proteins, etc.
     
    Last edited: Mar 2, 2014
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  14. Daffodil

    Daffodil Senior Member

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    KDM/Lombardi have already published a paper on this and are going to publish another one, on new discoveries, likely in the second half of this year.
     
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  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He can't discuss any of this pre-publication.

    Sushi
     
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  16. Nielk

    Nielk

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    It seems like there are a few researchers at the cusp of publication. I hope at least one will fan out to be something exciting.
     
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  17. vli

    vli

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    I don't understand. Have I got this right: so KDM published his paper on this Feb '13 and did not say which HERV was activated? I'm just trying to understand if KDM patients know something that we don't know.
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, he published in Feb 13 but is preparing to publish again. In Feb 13, the article said:

    (http://iv.iiarjournals.org/content/27/2/177.full)

    At that time they had confirmed that antibodies against HERV proteins had been found, but, at that point no specific HERV proteins were identified. The next article will, I'd guess, elucidate their further research.

    Sushi
     
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  19. biophile

    biophile Places I'd rather be.

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    The prevalence of (idiopathic?) chronic fatigue is about 10-15%.

    The prevalence of CDC 1994 defined CFS is about 0.4%, and Canadian criteria is about half that.

    In other words, CFS is relatively rare by comparison to 'chronic fatigue'.
     
  20. vli

    vli

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    I gather that identifying the exact HERVs is very difficult so thanks @Sushi it’s not surprising that KDM would take a while to do it.


    But sorry, I have more questions…


    I started reading your posts and trying to understand your views in the first place because I genuinely wanted to understand HOW as @Daffodil says KDM is “ten years ahead”.

    we all have HERVs, but we don t know yet whether HERV expression is the cause rather than effect of the main pathology. For instance someone suggested that a virus say EBV may be causing the HERV to be expressed-in which case, the chain of causation (if I've understood correctly) would be: EBV causes HERV expression, which in turn causes ME. If the HERV is being expressed wouldn't something still have to be causing it to be expressed (be it a virus and/or toxin)?? And shouldn't you then be trying to find out what that virus is (and I'm not saying it's EBV; I'm just using it as an example?)??

    So regarding what's causing the HERV expression, Chia has lots of tissue biopsies showing enteros, which is a big deal b/c unlike HERVs, enteros shouldn't be there—they are an outside pathogen, and Chia’s found them in tissue. Shouldn’t that be a smoking gun?


    I’m trying to be fair, I really am… but the little more that I try to understand of this issue everyday, the more I feel there’s more evidence AT THE PRESENT TIME for enteros to be the cause of ME than there is for HERVs to be. AND just because I say that doesn't mean I'm saying HERVs and enteroviruses are mutually exclusive, (so please don't put words into my mouth--thanks!!), especially if an entero can be proved to be the trigger for the HERV expression. Apart from what I said about the smoking gun of an outside pathogen being found—I feel enteros could be the cause because they've already been shown to be able to cause a LOT of probs like polio and viral myocarditis, and it is veery interesting that post-polio syndrome is so incredibly similar to ME. OTOH, HERVs have yet to be shown to cause a human disease, ALTHOUGH I’m by no means ruling them out (again, I’m just trying to learn here!!!).

    Can anyone here illuminate me a bit more??
     
    Last edited: Mar 2, 2014
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