Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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New Video on ME/cfs - "The Signature"

Discussion in 'General ME/CFS Discussion' started by SOnset, Nov 23, 2015.

  1. SOnset

    SOnset

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    Below is The Signature - the third in the series of films I've done on recent scientific research concerning ME/cfs.

    Its subject is the ME/cfs plasma immune signature study conducted by Mady Hornig, Ian Lipkin, et al. which came from The Center for Infection and Immunity at Columbia University's Mailman School of Public Health back in late February, 2015.

    I apologize to those who have been waiting for Mind The Abyss - Part 2, which I had indicated would be ready in 2015. I put that film aside for a time because I felt that the CII study had to take precedence. I am continuing to work on Mind the Abyss, but perhaps I should not be so bold as to predict a completion date this time. If I had my wish, I much rather find myself spending 2016 working on a film about the discovery of the cause of ME/cfs... and its cure.

    The Signature was originally going to be a fairly brief film, but it would up being close to 15 ½ minutes (which is why it took me so long). It has a pretty "deliberate" (i.e. slow) pace, so settle in. :)

    Like most of my previous films, The Signature features animated graphics and a soundtrack with a pretty wide dynamic range. Those bothered by motion on TV screens or sudden shifts in audio levels should take this into account. Please adjust the volume of your device if you find portions of the film too loud.

    Thanks once again for all the feedback on my previous videos. All the films can be seen here at: https://www.youtube.com/user/SuddenOnset/videos

    Best,

    Sudden Onset

     
    jimmy86, MEMum, SDSue and 27 others like this.
  2. The Lady of Shalott

    The Lady of Shalott

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    Your work is wonderful. I'm very pleased to have found your channel.
    It's all very well done and I love your soundtracks/music choices.
     
    alkt likes this.
  3. Sushi

    Sushi Senior Member Albuquerque

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    MEMum likes this.
  4. sue la-la

    sue la-la

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    beautiful video, Sudden Onset. :)

    i'm wondering if the 'scattered' results are related to recent activity - ie if long-term people, temporarily revert to the short-term pattern, when they 'exercise' and have a relapse. maybe our heroes, Mady Hornig and Ian Lipkin, already have theories about the scatter.
     
  5. JAH

    JAH Senior Member

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    Great job,

    - also sudden onset, flu like, 1987
     
  6. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Amazing video, and moving.

    Ps: The interstellar-soundtrack is soo good
     
    alkt and Theodore like this.
  7. aimossy

    aimossy Senior Member

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    Fantastic work!
     
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Awesomeness.
     
    meandthecat likes this.
  9. shannah

    shannah Senior Member

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    Amazing work Sudden Onset!
     
    meandthecat likes this.
  10. sillysocks84

    sillysocks84 Senior Member

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    So grateful you took time to put that together so more people can learn. We finally have something diagnostic. There will be an answer to this disease.Thank you!
     
    alkt likes this.
  11. shannah

    shannah Senior Member

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    There seems to be so much talk about inflammation not being as great after the 3 year mark. I've never understood that because the inflammation I experience is through the roof. The longer I've been ill and the sicker I become, the worse the inflammation.

    I'm always concerned about a stroke at this point and need to take high dosages of reishi extract and curcumin 95% which keeps it somewhat under control or at least not as bad. But lookout if I forget to take a dose.

    If I'm reading it correctly, your video clearly shows that the pro inflammatory markers, which are shown towards the end of the clip, are way out of wack in the later stages ME. Again if I'm reading this correctly, this would suggest that the pro inflammatory cytokines are running wild and some sort of brakes need to be put on them wouldn't it? Or is it not this simple (as few things ever are with this disease)? Perhaps someone with a clearer mind than mine can verify or refute this for me.
     
    alkt likes this.
  12. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi. You raise the same point I have observed regarding lack of long term cytokine inflammation in the Dr Lipkin, Dr Hornig CFS research. Long term severe CFS and ME patients, who self test, actually do have high inflammation (cytokines). Before I answer, I should comment this is a superb video, like something out of Hollywood with such beautiful music that ebbs and flows like an emotional journey. Thank you to SuddenOnset for making it, and the huge effort and time it must have taken to do it. I hope in the future, we'll see the Severe Vs Mild paper published from Dr Montoya and one day, perhaps the cronies who control us, can accept there are subsets of ME within ME, and subsets of CFS within CFS. I'll discuss this now, and why in my view this work of art video SuddenOnset has produced, doesn't quite hit the nail for ME research in terms of Science evidence. This isn't a criticism of SuddenOnset, but a criticism of how research is controlled for the most severely affected by analysing chronically fatigued people only. (Fatigue is not the prime symptom of ME).

    This disparity in results is explained, of course, of 'ME' being hidden within CDC Fukuda CFS, and that the more severe patients, will not feature in CFS research, as they are usually to ill to participate (if invited) or, more usually are excluded from CFS research criteria, as they are too sick (from ME) and develop secondary conditions, that lead to explained reasons for chronic fatigue (Immune activation, Cancer, Heart Failure, Hypothyroid, COPD, Asthma, Lyme, other viruses/bacteria etc). So they are excluded from research and the disease, ME, is hidden.


    From what I understand, the unreleased Dr Montoya paper, does show very high levels of cytokines (ME), the opposite finding or Dr Lipkin + Hornig. Indeed, in the recent 2015 UK mrc collaborative conference, Dr Montoya said the Cytokine Inflammation was highly elevated. It would thus be nice to see this research! This was meant to be published, around May 2014. It is now December 2015 and it's still not seen the light of day. :sluggish:

    High inflammation, decades later, will be a good video for 'SuddenOnset' to hopefully consider making oneday (to legitimize chronic inflammatory ME), but unfortunately, the superbly produced 'The Signature' video, ionically does the opposite, as no high cytokine inflammation is shown after 3 years, in CFS (called ME/CFS) which is then thought to be ME as ME is tagged onto 'CFS'. An ME without CNS inflammation doesn't exist.

    In essence: Dr Lipkin/Hornig's research may disprove chronic inflammatory ME, by not looking at people with chronic ME (as they don't have cytokine inflammation, which as you know from Dr De Meirleir and others (ME experts) is a hallmark of ME.

    This must be a problem with cohorts. Dr Lipkin and Hornig and not ME researchers. They have done a few papers, on Chronic Fatigue Syndrome patients. That is all. Conversely, Dr De Meirleir, Dr Peterson Dr Cheney, Dr Bell have been going for decades and know very well ME is associate to elevated Cytokine and Chemokine expression (hallmarks of a retrovirus), as they see multi decade ME patients in clinic, not people with 'Chronic Fatigue' who meet CDC criteria. Dan Peterson knows that a subset of 'CFS' dies from mantle cell lymphoma for example, and cancer, of course, is associated to intracellular inflammation and infections. Dr De Meirleir has found his ME patients riddled with Borrelia and it's co-infections.

    Dr Lipkin can never find infections, but others easily can. Which means? Wrong patient cohort. Not ME patients, but Chronic Fatigue patients who give in blood samples. Hence we don't get anywhere, or we end up with research that shows no inflammation after 3 years. o_O

    A PWME can disprove this, especially if active before the blood draw (we know from Nancy Klimas's work, that exercise increases inflammation). Hence GET is harmful.

    If European people want to test Cytokines/inflammatory markers out of curiosity, from an accredited lab, try Ganzimmun in Germany.

    They do Interferon Gamma (IFN-γ) or written, IFN-g). IL-2, IL-4, IL-6, IL-8, IL-17, TGF-b, TNF-a, VIP, MMP-8 etc.

    http://ganzimmun.de/seiten/lv_gesamt.php

    My Cytokines are elevated 30 years later. The opposite finding of Dr Lipkin/Hornig, as I don't have CFS or ME/CFS, but the original disease, ME.
     
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  13. meandthecat

    meandthecat Senior Member

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    Beautiful, painfully so
     
  14. leela

    leela Slow But Hopeful

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    This was amazing, and thank you @SOnset for both making it and dedicating it to Spindrift.
     
    RustyJ and Sushi like this.
  15. leokitten

    leokitten Senior Member

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    Researchers should get you to do the figures for their papers! You are able to translate complex data and information into very cohesive and understandable graphs/figures and thats not an easy task. Bravo.
     
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  16. Hanna

    Hanna Senior Member

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    One B-I-G thank you for your video @SOnset !
     
  17. SOnset

    SOnset

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    Thanks to everyone for the feedback! It's always hard to know how something will be received until you put it out there, so the feedback is very valuable to me.

    @Research 1st
    I think the thing to keep in mind is that the bar graphs in the paper and video represent the average, or mean, results.

    The scatter graph seen early in the film is only a simulation based on the actual data parameters, but looking at it you will see that many of the long-term data points are actually higher than the short-term or control means (averages) - and many of the short-term data points are lower than the long-term or control means. The long-term group no doubt had many members with elevated cytokines.

    The study does show an average pattern among large groups of patients, but the pattern would not be representative of all individual patients.

    However, the pattern is important, because, as Dr. Lipkin said, it's "unequivocal evidence of immunological dysfunction in ME/CFS."

    The paper is much more about showing that there is something biologically real and strange going on in the disease than it is about establishing some kind of cytokine profile for individual patients

    @shannah
    I think you may be confused by the third chart which shows the (inverse) relative size between short- and long-term patients. (1/SHIFT MAGNITUDE). It's confusing because a drop from short to long is displayed as a positive value. I could have made the chart "long vs. short," but that would have created other problems.

    That chart does not show that levels increase at some later time in long-term patients. It shows the (inverse) relative size of the change between short-and long-term patient averages. The thing to look for is the size of the bars, which represent the relative size of the changes between the two groups regardless of their position on the screen.


    UPDATED VERSION of "The Signature"

    After uploading the film, I noticed a few minor typos and a bit of unintended "ghosting" in the video that I suspect that almost no one will notice but me. I cannot directly update the current video and maintain the same link, so the revision can be found by following the "unlisted" link now located under the information section of the original video. I did this to keep it from appearing to the internet as if I'd posted an entirely new video.

    I should have double-checked everything more thoroughly, but I guess I was too anxious to get it our before Thanksgiving :)

    Best,

    SuddenOnset

    P.S. Here's a link to the Leonard Cohen song which is quoted in the film.

     
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  18. SDSue

    SDSue Southeast

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    Great work, @SOnset. Thanks so much.

    I love that the next recommended video is titled “10 Scariest Diseases in the World”, as shown below. Apparently we’re in good company.

    Screen Shot 2015-12-02 at 2.34.03 PM.png
     
    Research 1st likes this.
  19. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Please keep up the work Sudden Onset, your videos should win an award for their professional presentation.

    I love the first video you did on ME history when you listed all of the 'outbreak' dates and the dates just come flowing out like a torrent of information, the general public would otherwise be unware of. It must have taken a lot of research and work to collect al of the data, never mind produce the information in a musical/graphical/ form.
     

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