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 ...
Discuss the article on the Forums.

Lipkin and Hornig ME/CFS Monster Study: Microbes, Immunity & Complex Data

Discussion in 'General ME/CFS News' started by A.B., Aug 5, 2016.

  1. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,188
    An update from the Microbe Discovery project. The samples have been collected but $5 million are required to analyze them. They want to look at the following areas

    Microbiome
    Proteins (proteomics)
    Metabolism (metabolimics)
    Viruses (using Lipkin's super powered VirCapSeq-VERT to scan for a wide range of viruses at once)
    Immunology

    http://microbediscovery.org/2016/08/05/ciis-mecfs-monster-study-microbes-immunity-complex-data/

    Please fund this project. Even if patient donations alone may not be able to reach the target, every donation is a message of support that will attract donations from other sources as well.
     
    Jennifer J, NL93, Cheshire and 24 others like this.
  2. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    Why don´t they look at pathogenic bacteria as well as viruses? I´m not too bothered about this study not getting funded if they are only going to look at half the picture, especially as the other areas are already being covered by Davis, Hanson and KDM.
     
    duncan likes this.
  3. Comet

    Comet I'm Not Imaginary

    Messages:
    673
    Likes:
    3,615
    I just made a small donation to this (and to OMF). I would be great to see if they wind up replicating any of Ron Davis' findings or vice versa. The more studies the better, IMO. :)
     
  4. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    The ever ending predictable cycle of 'need more money' and 'need more research'. Where are the commit dates for the ME treatments?
     
  5. Comet

    Comet I'm Not Imaginary

    Messages:
    673
    Likes:
    3,615
    If we all gave a couple of bucks, it could make a big difference! We shouldn't have to fund our own studies, but, I would rather give a few dollars here and there and kick start the research than wait for the NIH.

    Besides, it's called CII's ME/CFS MONSTER STUDY! :woot:
     
  6. alicec

    alicec Senior Member

    Messages:
    1,405
    Likes:
    2,716
    Australia
    They are studying the entire microbiome (bacteria, viruses, fungi) over time at two different sites - gut and mouth. If there are pathogenic bacteria there they will find them.

    The immune response and metabolomics studies should reveal host response to the microbiome.
     
    J.G, ME_guy, Bob and 10 others like this.
  7. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,188
    I have donated to both the End ME/CFS Project and the Microbe Discovery Project.

    I think it's worthwhile to have a second "big data" study. If they both find the same thing, it will hugely increase confidence in the finding. The redundancy also protects against false positives (XMRV anyone?).
     
    Jennifer J, Bob, Solstice and 14 others like this.
  8. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    I know, but what if the pathogenic bacteria are somewhere else? Also, they may just study the normal gut species, and not look out for pathogenic bacteria in those places.
     
  9. alicec

    alicec Senior Member

    Messages:
    1,405
    Likes:
    2,716
    Australia
    The bacteria have to come from somewhere and those two sites are the most likely origin.

    Microbiome studies sequence all DNA present - they are not selecting any particular species.
     
    J.G, Valentijn, Simon and 3 others like this.
  10. Gijs

    Gijs Senior Member

    Messages:
    641
    Likes:
    1,296
    They will never get the 5 million dollar so this study will never be finished.
     
  11. msf

    msf Senior Member

    Messages:
    3,188
    Likes:
    4,454
    That´s good that the microbiome study is going to sequence all the DNA present, but your first statement is just speculation. If Lyme is involved in many cases, I doubt it will be found by this study.
     
    duncan likes this.
  12. Tuha

    Tuha Senior Member

    Messages:
    628
    Likes:
    1,071
    why not? There were already some big donors who already donated more than 1 million dollar, Hutchinson family gave 10 million dollar (Also Lipkin got quite a lot of money from that pocket)
     
    Jennifer J, A.B., Bob and 10 others like this.
  13. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    I have to echo @msf's concerns about Borrelia. Same holds true for Bartonella.

    It almost seems Lipkin is steering clear of tick-borne diseases, or is it bacteria in general?

    Could it be due to Columbia U's Tick-Borne Disease Center? I cannot believe it boils down to a professional courtesy to Fallon's center.
     
    JaimeS likes this.
  14. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,860
    This study is one of the biggest and most rigorous ever and you aren't bothered about it ?
    I don't understand your comment.
    The OMF study is great but it's 20 Patients at one time point AFAIK.
    Hansons study doesn't come close in terms of scope.
    KDM ? Are you joking?

    As patients we need as much good quality research as possible, this is top quality.
     
    Neunistiva, MEMum, Cheshire and 8 others like this.
  15. Dufresne

    Dufresne almost there...

    Messages:
    873
    Likes:
    1,125
    Montreal
    Just as it wasn't found by their sequencing for pathogens in plasma and spinal fluid. We did get those anelloviruses though, didn't we?;)
     
    Last edited: Aug 22, 2016
    akrasia likes this.
  16. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    In the US alone, 300,000 people are infected with Lyme every single year - and 20% of those are stricken with symptoms that do not resolve, even though they are told Lyme is cured. And that doesn't even count other Borrelia species, or even all the strains of Lyme.

    Then there is Bartonella, also with many different pathogenic strains, even though we only can test for a couple.

    There is also Babesia.

    So literally hundreds of thousands in the US infected by TBD pathogens whose symptoms in many ways mimic or parallel ME/CFS.

    How can Lipkin NOT look for these?
     
    Theodore likes this.
  17. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,975
    Bob, Valentijn, Simon and 2 others like this.
  18. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    He seems to be assuming Bb has been handily dispatched as the lead candidate for persistent symptoms in Lyme patients after treatment. It's a disturbing assumption, especially in light of recent studies by the likes of Kim Lewis and Monica Embers, or the new Mayo Lyme species.

    Thank you, @mango - I had forgotten this, but now I seem to recall it.

    So, doesn't he have enough to explore with the other known TB pathogens? Don't they present with enough challenges and controversies? Still, perhaps he can find something new...so, sure why not explore, even though many feel we haven't remotely mapped out the territory of current known TBDs effects?

    More to the point - will he take what he finds in the TICKS' microbiome and apply it to what he is searching for in the microbiome of pwME?

    How will this effort directly help pwME in his big ME/CFS project?

    Here is an example: So, Borrelia miyamotoi is thought to be a relatively new pathogen in terms of its incidence in most of the world. But let's say IT is responsible for ME/CFS...that in fact it has been around since the late 50's...There is no publically available test for miyamotoi - or one has only very recently been made available. How would the Lipkin study find this out if it is not even looking for Borrelia DNA in samples from pwME?

    The omission of bacteria in general, and specifically TBD's, seems odd, especially in light of all the negative publicity old Lyme assumptions are getting these days.

    It's great he is looking for all these viruses, but if they are only half the story...Yes, you can see the sun set by looking West, but good luck with that if you are hoping to see the sun rise.
     
    Last edited: Aug 5, 2016
    Theodore likes this.
  19. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,860
    I am surprised by the negative vibes here.

    This is an ambitious study which should lead to a deeper understanding of ME/CFS.
    I don't think anyone is saying it will tell us everything but it could be a very telling study.

    It's one of the biggest studies ever into ME and there seems to be criticism here because it's not big enough ?

    Combine this study with the NIH and the OMF and maybe a picture will begin to form. I don't know, but it's a lot better than no study.
     
    J.G, CJB, Neunistiva and 23 others like this.
  20. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    Take 5 viruses and throw $1Million at each one of them with the most exhaustive battery of tests imaginable.

    That would be a great study disproving an association with those viruses - or, if lucky, finding the cause.

    However, if you are picking the wrong pathogens - then you just flushed $5Million down the crapper.

    Hey, he cannot cover all the bases. That is a given. But bacteria in general??

    And TBD's are huge. It's a strange blind spot.
     

See more popular forum discussions.

Share This Page