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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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ME CFS conference in New York 20th November 2013 relating to treatment .

Discussion in 'General ME/CFS News' started by denlander, Sep 13, 2013.

  1. Andrew

    Andrew Senior Member

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    I've long wondered if we would be better off putting more attention on soliciting aid from private foundations, then trying to change the mind of the NIH.
     
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  2. john66

    john66 Senior Member

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    I was at the conference and just got home. My head and body are fried, crashing in a major way, but it was worth it. All of the speakers were outstanding and it give me hope that progress is being made on a shoestring of a budget. All of the doctors there are making great use of new technological capabilities that leverage data analysis. I have notes which I will try to distill over the next couple of days and report more. Thanks to Dr. Enlander, Mt Sinai and Hemispherix for sponsoring it. Most of all thanks to the super generous man who started the whole thing at Mt Sinai with the heart of gold.
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, now I remember.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    A tweet of Jeannette's that I think captured something interesting-
    #MECFS Dr. K: it's all about studies. If there is only $3 mill per year in research money, who will do validation studies? W/o that, study won't catch on. Grant money not given for validation studies, typically. Also need business partners who will market biomarkers.

    http://tl.gd/mvbvl9

    My Bolding
     
    Last edited: Nov 23, 2013
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I saw Simon Wessley's name tag on the table at Mt Sinai. I asked if he really was coming and the woman said yes. But didn't see him or anyone else with Bozo the clown hair.
     
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  6. leela

    leela Slow But Hopeful

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    Justin! you're wicked! :nerd:
     
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  7. Wally

    Wally Senior Member

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    All Points Bulletin - New York City Please Be On The Lookout For This Suspect (a.k.a. "Bozo The Clown")
    [​IMG]

    [​IMG]
    [​IMG]
     
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  8. Wally

    Wally Senior Member

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    If I was going to give money to a private institution/foundation. I would suggest that this one be at the top of the list.

    Open Medicine Foundation (Founder Dr. Andreas Kogelnik) http://openmedicineinstitute.org/foundation/mission/
    Of course there are many other private institutions/foundations that also would be worthy of a donation - here are a few others that I would feel comfortable making a donation to fund their research initiatives.

    Simmaron Research - Dr. Dan Peterson - http://simmaronresearch.com/

    Stanford Medical School's ME/CFS Initiative - Dr. Jose Montoya - http://chronicfatigue.stanford.edu/

    Perhaps others will have suggestions of other private institutions/foundations that they feel confident enough about to support. If you decide to donate to any research initiative be very careful that they have enough transparency/accountability that you can see where your dollars are being spent.

    I do have concerns that there may well be a man (men) behind the curtain who does not have the best interests of ME patients on his agenda.
     
    Last edited: Nov 21, 2013
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  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What? That we shouldn't count on the gov't and Private Foundations is where it's at? I don't see why we should keep banging our heads against the wall, expecting things to change. Why would they change now? Money's tight!

    GG
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ruscetti noted in the old days before there was an NIH, all research was funded by private foundations.

    By private foundations for funding, I think he was talking more about apply for grants from foundations that have nothing to do with ME, like the Rockefeller foundation, etc. But he didn't specify, so I don't know.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Dr. Enlander said: This is NOT a psychiatric disease!! It is a physical disease.
    Applause. Right then his phone rang loudly. I said "Simon Wessely calling." Thanks for those of you who politely chuckled! : )
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This email from my Mom (72yo) sums things up nicely:

    "Good morning Justin!
    Dad and I are very glad we attended the symposium yesterday. Much eluded us but we had a sense that things are moving forward on the ME/CFS front compared to the symposium two years ago. We see that Eric is enthusiastically charging ahead & Mikovitz is not in jail"
     
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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It was a little funny. Dr. Enlander in his dark suit and french tie standing next to Eric at the podium in his shorts and bookbag. I think that Eric had a short sleeve polo shirt, instead of a tshirt i think he wore two years ago. I guess he's getting uptight being on the east coast so long.

    At first I thought Dr. Gupta was a sharply dressed intern or resident. I was surprised he was so young looking. (Im not sure why I am doing the runway report, not my usual, but it just kind of struck me)

    Eric knows how to give a good powerpoint! The graphics were tight.

    Sorry to sound chipper like Cort on a conference high, but all this stuff he and Klimas are doing with networking is so exciting. He hasn't done much with ME yet, so there wasn't much to show specifically except there was at least one slide where he showed a representation of a network of genes associated with neuroimmune disease and all the many aberrant genes were clustered together (rather than randomized as would be expected if there were no connection between this network and ME).

    He and Klimas emphasized that its not just which biomarkers such as cytokines and genes were aberrant, but how they interacted with other cytokines and genes. For example, Dr. Klimas showed that in normal controls, IL1 produced in response to exercise did not trigger any other cytokines, hormones, genes, neurotransmitters, etc. Whereas in GWI, the exercise induced IL1 caused a huge cascade of pathology including up regulation of many specific messenger molecules. This is vital to know because we can focus treatment then on the 'heavy-hitters' like IL1 that cause all the other problems instead of trying to down regulate all several dozen molecules up-regulated downstream by IL1.

    Eric also is taking a network model approach to the pathology. He seems to take it a big step farther, although he hasn't done much yet on ME. He collects tons of data from many patients and then somehow sets up a model of the networks 'in silico' as he called it, so he could do virtual experiments on the computer very quickly to see what tweaking this or that molecule or group of molecules would do to the network.

    In this way he can then correlate the computer model predicted positive changes on the one hand to already existing interventions such as specific drugs, nutrition or exercise on the other. He gave two good examples of drugs his lab had repurposed in this fashion. One was an unexpected existing drug that turned out to have efficacy on some type of severe GI inflammation/ulceration, iirc. The other one just floored me. He said his models predicted that an old tricyclic antidepressant would work on lung cancer! They did a trial and it worked better than the most recently approved lung cancer drug!! Wow! I can't wait for him to get further into ME.

    Imo, If you are looking to donate money to ME research, I would start with the Mt. Sinai project.

    CAA has a grant out for a company doing some kind of computational prediction of drugs that could be repurposed. I'm sure they are not as good as Eric, looking at networks etc, but hopefully they are on the right type of track.

    Klimas looked like she was doing really great stuff. But the constant 'chronic fatigue', 'chronic fatigue' out of her mouth was like nails on the chalkboard as usual. Every time she said 'chronic fatigue' I wanted to yell out 'syndrome slash M E!"

    I heard the next one will be in a couple of years again. Can't wait.
     
    Last edited: Nov 21, 2013
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  14. Nielk

    Nielk

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    Thank you @justinreilly for this. I almost feel like I was there, with the runway report...:cool:
     
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  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Eric also said something interesting about how he is able to do virtual randomized trials on the computer. I didn't understand it, but it was something like he figured out that during cellular reproduction, when the alleles cleave in two this creates sufficient randomization for a trial. Sorry I don't have the head for science. He said this insight was named one of the top 10 science ideas for whatever year a few years ago.

    If you like Judy you will love her talk, if you haven't heard it before from another conference (don't follow her so I don't know how much of her presentation was new). I did not understand it, but it actually seemed convincing even though I didn't know what she was saying (as i think i have said before)! Just her approach of laying out and explaining the right primary evidence, result after result, study after study, boom, boom, boom impressed me. I had seen a couple of her talks on the internet, but it kinda wasn't the same, I guess being in the room; she has a 'convincing presence' for lack of a better term.

    This is probably old news to some of you, but I think she was saying that her samples were not contaminated in the science paper, which she proved by getting the samples out again and western blotting, but the fact she couldn't reproduce the results in the Lipkin study meant the finding wasn't yet valid (Im not sure of the wording she used here, but she seemed to be saying that now they were 'officially' not valid results, but seemed to be allowing for the possibility that they could in the future be replicated).

    She also talked about XMRV-2 which was discovered by another scientist and was very homologous to XMRV. But which got quickly renamed to something else 'under political pressure', but she still likes to call it XMRV-2. Noted that her skeptics had been saying that the origin of XMRV was such an unlikely event , that it wouldn't happen again, But she points out that it did happen again in XMRV-2. She is worried that these and other hardy gammaviruses which can spread by air and replicate fairly quickly will at some point be able to adapt to infect humans.

    Which is, fwiw, a worry of mine too. It seems like a fine line between a 'lab contaminant' and a plague.


    She said other things my brain wasn't able to absorb.
     
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  16. leela

    leela Slow But Hopeful

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    Erm, Eric Who? I haven't sufficiently dosed on the green tea yet today, sorry.

    Runway report=hilarious
     
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  17. Purple

    Purple Bundle of purpliness

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  18. Wally

    Wally Senior Member

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    Justin,

    Thanks so much for attending this talk and reporting back on what you learned. I thoroughly enjoyed the "runway" critique and your Mom's e-mail. It is nice when a little levity can be thrown into the mix.

    I had posted earlier, in response to the comment from Frank Ruscetti about private funding of ME research, about three (3) private research initiatives that I would feel comfortable donating to. I was hoping that someone would make a comment about others.

    Can you provide a link to where people can find more information about the Mt. Sinai project?

    Wally
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Wally,

    Thanks for your interest. Actually, I couldn't find any official webpage on the center, which needs to change. I sent an email to his office and patient Jay Spero who helps Dr. Enlander with his web presence re registering that opinion. That may have to wait until the IoM thing is over.

    In the mean-time, the reason I would give to the Mt Sinai ME CFS Center is
    (1) the quality of the research as I spoke about (as best I could)
    (2) it is the only ME research or clinical center at a leading teaching hospital, which counts hugely for credibility in the medical world
    (3) the marquee name of Eric Schadt

    These last two may seem superficial, but we all have experienced how doctors are unduly enamored of authority. These last two reasons mean that ME and bona fide ME research will be accorded more respect in general and the related benefit that their groundbreaking research will get into top journals much easier.

    Mt. Sinai has been rising in the rankings lately as they get huge donations from NYC billionaires and have sold several fifth avenue residential buildings to raise capital which they have used to massively increase floorspace and cutting edge equipment and also lure top docs from other hospitals. Mt. Sinai is on a roll that we can benefit from.

    It's also my understanding that the hospital throws in its own money for the center in addition to donations specified for it, but I will check on that.

    (The best I could do is this donation form, but I like you would want to know more before I donated; the best info will be the conference DVD when it comes out)

    https://philanthropy.mountsinai.org/donate
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Another thing, not ME related really, that Eric S. said that i found interesting:

    He's collaborating with Mars, which owns pet-clinics as well as mars bars, etc. It turns out homes with pets are more likely to share similar micro biomes among family members. They would test the dogs micro biome, maybe because its easier than testing the humans, not sure. Then they were thinking of trying to change the whole family's micro biome by changing the dogs diet and i guess adding probiotics.

    Out of the box, this guy.
     
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