Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Microbediscovery; Letter from Dr Lipkin and Dr Hornig, some encouraging news from their research.

Discussion in 'General ME/CFS News' started by aimossy, Dec 15, 2014.

  1. aimossy

    aimossy Senior Member

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    Here's a lovely message to us all from Dr Lipkin and Dr Hornig, with some encouraging news from their research!
    ____________________________________________________________________________

    The Center for Infection and Immunity
    Mailman School of Public Health
    Columbia University

    December 12, 2014

    Dear Friends:

    It's been nearly a year since the Microbe Discovery team launched the ME/CFS microbiome crowdfunding campaign. To date, more than $153,000 has been raised from nearly 1000 donations in 25 countries. We want to take this opportunity to thank our supporters for all your fundraising efforts, donations and general support and encouragement. And we'd like to especially thank the crowdfund team for their hard work, creativity, and financial support.

    It’s been a productive year for the Center for Infection and Immunity (CII). While our research on emerging infectious disease outbreaks such as MERS and Ebola was particularly demanding, we never lost focus on our commitment to continue to make breakthroughs in the area of ME/CFS research.

    With the ongoing collaborative support from the Chronic Fatigue Initiative, Simmaron Research and Edward P. Evans Foundation our research team has recently discovered differences in markers of immunity and metabolism in ME/CFS that may relate to disturbances in the gut microbiome. Details will be published in 2015. We look forward to sharing these findings with the ME/CFS community.

    We presented our work at numerous worldwide conferences including:

    • IACFS/ME Scientific Conference in San Francisco, CA in March
    • 9th Invest in ME Research International ME Conference 2014: Synergizing Research into ME in the UK in May
    • ME/CFS Research Collaborative Scientific Conference in the UK in September
    • National Action Center for CFS/ME in Oslo, Norway in November
    • NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Bethesda, MD in December

    We continue to raise awareness for our cause in the media and were thrilled that Buzzfeed and Columbia University highlighted our work and community partnership. We wish to thank Phoenix Rising, Cort Johnson of Health Rising and Simon McGrath for the invaluable support and continual coverage of our research efforts.

    Thank you again for your generous, ongoing support. Best wishes for a wonderful holiday season.

    With our deepest appreciation,

    W. Ian Lipkin, MD. Mady Hornig, MD.

    _______________________________________________________________________________
    PDF letter here:
    https://drive.google.com/file/d/0B4eu0I4ahdSkdXQtYzhsNnloVXF4Rnh5SFFycU1laHlUa2I4/view?pli=1
     
    Valentijn, Kati, RL_sparky and 11 others like this.
  2. aimossy

    aimossy Senior Member

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    "...our research team has recently discovered differences in markers of immunity and metabolism in ME/CFS that may relate to disturbances in the gut microbiome. Details will be published in 2015. We look forward to sharing these findings with the ME/CFS community."
    -- Dr Lipkin and Dr Hornig


    One of Dr Lipkin and Dr Hornig's key reasons for looking at the microbiome in ME/CFS is that it might be driving the inflammation seen in the illness, and the microbiome has been implicated in immune activation in other illnesses, including Crohn's Disease and Multiple Scelerosis. The crowfund study aims to look at the microbiome alongside inflammatory markers to see if the microbiome could be driving inflammation. Another way the microbiome could cause disease is through metabolic products from gut microbes entering the body. In his talk to patients in London,Dr Lipkin said of the microbiome "I think it produces compounds which traffic through the body or into the brain and cause all sorts of curious diseases". The latest findings from Columbia may relate to metabolic products found in the blood, some of which may well have come from the microbiome.
    -- The Microbe Discovery Team

    Why not donate to The Microbe Discovery Project for Xmas. www.bit.ly/DonateToDrLipkin
     
    Last edited: Dec 15, 2014
  3. Esther12

    Esther12 Senior Member

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    Shout out to @Simon - big up! @Cort and the Phoenix Rising team too.

    In some ways I'm cautious about any sort of promotion of preliminary findings... but I think they've found it! Cure is on the way if we just make a few more donations!! GO-GO-GO!

    It would be good to be able to get the total higher, especially considering the work and resources Lipkin and Hornig have put in themselves. Every little help, but we do need a lot of us broke ones working together to make much of a dent in it.
     
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  4. Bob

    Bob

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    Me too. We're not sure exactly what the research findings are. We know that there are some interesting cytokine results to be published, for plasma and perhaps cerebrospinal fluid as well, and there also seems to be a specific metabolite that they're looking at. And then hopefully more research findings throughout 2015.
     
    Last edited: Dec 15, 2014
  5. RL_sparky

    RL_sparky Senior Member

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    In light of these new findings yet to be revealed, brings to mind something from Simon's blog post on Dr. Lipkin's talk in London where he said:
    "So the best way of demonstrating a microbe plays a key role in an illness such as ME/CFS is to show you can treat patients with drugs that target that microbe and that the patients improve or recover – or to find a vaccine that can prevent the illness. No doubt this is just the kind of proof that patients would most appreciate".
    It would be nice if what he found leads to treatments.
     
    Sean, rosie26, Bob and 2 others like this.
  6. Tuha

    Tuha Senior Member

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    if you have possibility - just donate to dr. Lipkin´s ME research. Dr. Lipkin´s and Stanford´s team are the biggest names in our field. I am impressed how fast they are able to do research with few financial resources. imagine if they would get a lot of money from governement. Now it´s up to patients to donate till the day when the governement will not be able to refuse anymore. It´s pity to wait and lose every single day and to hesitate with donation.
     
    Sean, rosie26, aimossy and 4 others like this.
  7. Sasha

    Sasha Fine, thank you

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    I agree! The donation link is in my signature. :)
     
    rosie26 likes this.
  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I wonder who typed that above Esther 12, was it from a Blog you found?

    A 'cure' being on the way is impossible for a heterogeneous fatigue based disorder that has no test.

    Only a subset could be 'cured'.
     
  9. Esther12

    Esther12 Senior Member

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    Sorry for not being clear - that was all me. I was just playing around.
     
  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks Esther. I should have known, you have a very quick wit and I was very slow in catching on.
    Now I've read it again, it makes immediate sense what you meant. Doh!

    I shall retire with rather obvious brain drain, and being the last to catch on. :p
     
    Esther12 likes this.
  11. aimossy

    aimossy Senior Member

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    I think it is pretty much anyone's guess which specific work - in which area of study the "immunity and metabolism" differences are in. They do a lot of work and then have to catch up with getting it all written up and published. They have done a lot of work on ME/CFS this year in a fair few areas and this is "recently discovered". It was reported by action for ME from the UKCMRC conference that Dr Lipkin said they have a "Hot finding". It is clear they are looking forward to sharing this. I'm pretty happy if this team finds anything with respect to ME/CFS that shows differences in immunity and metabolism. I hope it doesn't take ages next year to hear more.....feels like a drought with publishing this year so fingers crossed for a run of publishing's next year.
     
    Last edited: Dec 16, 2014
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  12. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Sounds like Dysbiosis/Leaky Gut Syndrome which a lot of people have been trying to work on.
     
  13. aimossy

    aimossy Senior Member

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    Thanks for highlighting! There is a missing word and there is a typo!
     
    Last edited: Dec 16, 2014
  14. RL_sparky

    RL_sparky Senior Member

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    From the Microbe Discovery Project FB page, A note from Dr. Lipkin and Dr. Hornig: "We are deeply appreciative of the continued support of the entire CFS community, we look forward to sharing exciting new findings with all of you in early 2015!"
     
    Jon_Tradicionali, Simon and aimossy like this.
  15. aimossy

    aimossy Senior Member

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    Last edited: Dec 16, 2014
    Simon and RL_sparky like this.

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