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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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2014 Stanford ME/CFS Symposium Videos

Discussion in 'General ME/CFS News' started by Timaca, Jul 9, 2014.

  1. Bob

    Bob

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    A brief summary of Lipkin's research program, that he included in his presentation:

    Lipkin's doing a self-funded RNA Seq study with 100 patients and 100 controls, using the samples from the XMRV/p-MLV study. They are looking for biomarkers, and seeking insights into pathogenesis, and potential treatments.
    The investigators are Mady Hornig and Lan Quan from Columbia and two researchers from NCBI.

    Also, he says a metabolomics study and a proteomics study are in progress.

    Then there's the gut microbiome study, that we are crowdfunding.

    And he is also seeking funding for a study doing high-throughput sequencing of PBMC. (I assume this would be looking for pathogens.)

    He's also completed the cytokine study, that has some interesting results, that's awaiting publication.
    Simon, Helen, goldberg and 3 others like this.
  2. Firestormm

    Firestormm Guest

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    Thanks :)

    I will try and transcribe this video - only one I listen to thus far - but hopefully someone else will beat me to it as I wont be able to for some time yet.

    Lipkin also mentioned (from memory) that they were looking at 'ticks' and bacteria other than the one most associated with the cause of Lyme disease: and how he hoped to be moving ahead with research to see if those who were carrying this bacteria (as well as those without), also carried these associated bacterium/viruses. He spoke of trying - I think - to better ascertain what the cause might be for 'chronic lyme disease' which would I think appeal to a great many people.

    Apologies. I forget the details. I think that's more or less right.
    Ruthie24, Helen and goldberg like this.
  3. Bob

    Bob

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    Ah, yes, I forgot to mention the tick study because it's not ME/CFS, but it's a fascinating study.
    And the study has got the go-ahead, and is in progress, I think he said.

    They've studied a number of wild ticks to see what pathogens they harboured, and they found a number of different pathogens in the ticks.
    So now they are going to study existing Lyme disease patients (who have previously tested positive for Borrelia) for antibodies to these various alternative pathogens that they found in the ticks, to see if there is co-infection.

    If the patients are positive for an alternative bacteria, they can then be treated with suitable anti-biotics.

    It's really ground-breaking stuff, but at the same time it's seems like a very straightforward, obvious and common-sense study design. It seems strange that it's not been done before.

    (I might have got some of the finer details wrong about this study - I'm writing from memory, which isn't always reliable.)
    Last edited: Aug 18, 2014
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  4. RL_sparky

    RL_sparky

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    Having watched the Lipkin presentation from the Stanford symposium I was excited when he was talking about RNASeq and made the following comment, "That they had terrific findings that were going to revolutionize Chronic Fatigue Syndrome".

    Only to have him say there was a problem that the NIH pointed out to him. (Batch Effect)
    I'm sure hoping they are able to come up with just as exciting findings after re-doing the Study using randomized case controls which he alluded to.
    I also see that Dr. Kogelnik is working on a RNA expression test.

    http://openmedicineinstitute.org/news-events/press-releases/affy1/

    "Plans are in place for development of two key tests - a detection biomarker based on RNA expression data from patients and normal volunteers, and a theranostic tool to evaluate treatment efficacy".

    If the new findings are explosive then we will have the ammo to go to our elected officials and forcibly demand the funding that they have failed to provide to date.
    Looking forward to better days shortly ahead for all of us.
  5. Bob

    Bob

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    @RL_sparky, yes, that was quite an anti-climax, wasn't it!

    Like you say, Lipkin's RNA seq study has the potential to find biomarkers, but so do his other studies.
    The proteomics and metabolomics studies could potentially find specific protein or metabolite biomarkers.
    And, as Lipkin & co really know what they're doing, if they find something significant, then it can't be ignored or dismissed.

    And I think they are quite likely to find a biomarker in one of these studies. I'd be surprised if they couldn't find some sort of unique protein (or combination of proteins, or upregulation of proteins) or autoantibody in ME patients.

    He hasn't started the microbiome or PBMC studies yet, but they also have massive potential.
    Last edited: Jul 14, 2014
  6. catly

    catly Senior Member

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    @Timaca Thanks for posting this link. I finally finished watching all of the videos.

    Would like to extend a big thanks to Jose Montoya, Ron Davis and all the researchers and clinicians at Stanford, along with all the other presentors including the journalists that participated in the symposium.
    Timaca, NK17, Gemini and 6 others like this.
  7. alex3619

    alex3619 Senior Member

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    I still haven't seen all the videos, though I am now up to the last one. I thought the microglial and RNA studies particularly interesting, but I wanted to comment on this one:

    http://mecfs.stanford.edu/2014SymposiumVideo.html


    Video 4

    EEG/LORETA Studies Suggest Cortical Pathology in ME/CFS
    Marcie Zinn, PhD (but also a patient0, Mark Zinn, MM

    Decreased alpha wave peak, increased delta waves and lower beta waves using EEG and qEEG can potentially explain nearly all our cognitive deficits. These range from memory, attention issues and executive function, to emotional lability and delayed reactions, muscle weakness, ataxia, pain, and hypersensitivity to stimuli. It looks like can all be shown with this technology, if you know what to look for. The thalamus appears to improperly functioning, as does the brain stem. Further research is needed. Showing a deficit is not the same as understanding the underlying cause.

    Delta wave activity appears to affect Broca's area, which is critical for language.

    They propose possible limbic encephalitis.


    A regular EEG is not very useful, a qEEG is required.Computational analysis takes five minutes.but the cost is about $10,000 though.
    NK17, goldberg and catly like this.
  8. globalpilot

    globalpilot Senior Member

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    I believe leptin is not found to be high, but rather correlates with fatigue. He (Dr Younger) says that the microglia are sensitized (mentions bacteria, virus, diesel particles as possibilities) and I presume therefore normal leptin levels exaggerate the response by the microglia. That's my take on it. Although, confusingly, later in the talk he does say leptin sensitizes microglia. Here are my very rough notes on Dr Youngers talk:

    - theory: could be a parameter that is not above a threshold but still driving symptoms: that could happen if , eg, the downstream targets of that cytokine or parameter are sensitized (it’s threshold has been suppressed)

    - 3 women with fibro

    o Measured many metabolites

    o Lots of things correlated with sx but only thing correlated in all 3 sx – leptin

    - 10 women with CFS

    o Hypothesized leptin would correlated with fatigue

    o 6 out of 10 patients correlated significantly

    - 10 healthy women who had fatigue

    o Almost never a correlateion between leptin and fatigue

    o 1 person showed a correlation

    - Did network analysis b/c so far only looked at leptin

    o Leptin is only cytokine correlated with fatigue

    o Leptin is correlated with a lot of other cytokines and chemokines

    o Those analytes may be driving the leptin which is the final gateway driving the fatigue

    - If we only know cytokines can we predict if you are having a good day or bad day ?

    o 78.3% accuracy in predicting whether you are having a good or bad day on new data

    o 55.15% in controls (no better than chance)

    o This means these cytokines have to be related to fatigue in a meaningful way

    o These are inflammatory based markers so we really have to look carefully at inflammation in CFS

    - Leptin

    o 3 times higher in women than men

    o Extremely inflammatory

    o Can change immune system drastically

    - Microglia

    o Immune system cells in our brain and spinal cord

    o Our primary defence in the brain and spinal cord

    o Patrol and look for problems – viral , bacteria, cell death and when they find a problem they change shape drastically and pump out proinflammatory factors in your brain and spinal cord

    o These factors interact with neurons and lower the threshold of those neurons to fire, particularly neurons that communicate something bad is happening – neurons responsible for the experience of pain and neurons responsible for the experience of fatigue

    - Coughing and runny nose engaged by different mechanism than microglia

    - What is supposed to happen when you get sick, is microglia activate, you get rid of the infection and you feel better

    o What if you had a condition where the microglia became sensitized and overexpressed the receptors that we’re looking for probblems

    o What if they were primed and can be activated on a hair trigger ?

    § It turns out microglia can be primed – they can be pushed into this hypersensitive state – called primed

    § When primed it takes very little stimulus to push them into active mode

    § A lot of things can prime microglia – aging, chronic stress, exposure to diesel particles, opiod medications over time, a huge immune hit, multiple immune hits

    - Leptin crosses the BBB and sensitizes microglia

    - Il-1 is strong indication of microglia activation

    - Leptin does 2 things to microglia : lowers their threshold and it makes them react much more than they should once they are activated

    - Potential role of leptin in causing ME symptoms

    - The whole model

    o Microglia are sensitized – could be due to any number of reasons – viral, bacterial, post lyme etc

    o Then they are sensitized and start to react to something like endogenous opiods

    o Then they are chronically activated so the minor amount of exertion and the chemicals that are produced from that can now set off alarm bells that should only be set off if you’re really sick

    o Says leptin plays into this but doesn’t explain how

    - Treatment

    o Leptin antagonists

    o Doesn’t recommend attacking leptin directly b/c leptin interacts with every kind of immune cell you have

    o Caloric restriction, avoiding stress eating, eating low GI diet reduce leptin

    o Instead of targeting leptin, can target primed microglia directly

    § List includes naltrexone; all reduce microglia excitability

    § Also list of herbs etc – includes pycnogeol, boswella etc

    - Leptin microglia is one of the subtypes
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  9. alex3619

    alex3619 Senior Member

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    Three of the things listed for decreasing activation of microglia I have tried. I get response from all three, but LDN is a weak response for me. Resveratrol has critical responses for me, in turning off lung issues. Pycnogenol got the most dramatic response I have ever had. There was no mistaking something was happening, starting within minutes. However this was on a strong dose (I no longer recall the dose, but it was four capsules simultaneously).

    I get a lot of fatigue after eating sometimes, but this does not correlate with blood sugar. I thought it might be from orthostatic issues, but now I wonder if its leptin.
    NK17 likes this.
  10. Helen

    Helen Senior Member

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    I don´t want to hijack this thread but did you write about these experiences in another post? You stopped? Why?
  11. alex3619

    alex3619 Senior Member

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    @Helen I have written about this elsewhere. Cost, including side effects, were an issue. I am not giving up resveratrol though. Pycnogenol was part of my shotgun protocol that completely restored my energy. The side effects were equally as disabling though, and the cost prohibitive. This is what propelled me to go back to uni to finish my biochem degree, so I could figure this all out. I kept running into limitations in my knowledge, and nobody had the information I needed. That was when I started debating with Marty Pall and Rich van Konyenburg, around 2000. Now I feel the time is right to retry all that, we have much better knowledge now. So I am slowly working toward rebuilding my shotgun protocol.

    Advances in information like at Stanford are a big part of that. One thing I have wanted for a long time is for myriad tests to be done on exactly the same cohort, so comparisons could be made using different tests - that is how you find subgroups. Stanford has started doing that. OMI has started doing that. Researchers all of the world are now collaborating like never before. This could be the dawn of a new age for those with ME and CFS.
    Helen, Gemini, rosie26 and 3 others like this.
  12. Helen

    Helen Senior Member

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    Thanks for sharing your experiences - and your opinions. I quote you again:

    Researchers all of the world are now collaborating like never before. This could be the dawn of a new age for those with ME and CFS
  13. Gemini

    Gemini Senior Member

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    Alex,
    Just came across an interesting Aetna Insurance qEEG guideline indicating encephalomyelitis is covered (see Table by diseases midway down in article):

    http://www.aetna.com/cpb/medical/data/200_299/0221.html
  14. ukxmrv

    ukxmrv Senior Member

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    Is that for the analysis Alex? I've had a QEEG and analysis for a lot cheaper and that's in London
  15. alex3619

    alex3619 Senior Member

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    That is the US quote, from the Stanford conference speaker. Here it is AUD$300. I do wonder what else was involved though. The protocol might be different, and a research protocol might be much more expensive than a regular clinical protocol. So other costs might be added in to that figure.
    ukxmrv likes this.
  16. alex3619

    alex3619 Senior Member

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    Which means acute brain inflammation is covered. We might have to fight to get ME covered.
  17. lazzlazz

    lazzlazz

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    If people think transcriptions are a good idea .... first, if there are any here who know relevant software ... is there a way to do it with a program like Dragon (I've never used it and a few years ago, I heard it wasn't so great for transcribing, but perhaps it has improved).

    If there isn't an easy computerized approach, another approach would be to use "distributed transcription" - in other words, a bunch of people transcribe a video, perhaps 5 minutes each. Then there are 1 or 2 which check the transcription.
  18. lazzlazz

    lazzlazz

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    In case anyone is interested, I've attached my notes from Dr. Komaroff's talk.
    Note: This isn’t a transcription, but rather, primarily I captured the slides, plus some of his additional comments that I felt were interesting. I think it is far better to watch & listen to the video yourself than to read these notes! (The notes below while quite accurate were not carefully checked. If you have a question, watch the video.)

    I was going to upload the MicrosoftWord file, but .doc is not allowed, so here's the .pdf version.
    If anyone wants the .doc version (so you can add your own notes), PM me with an email address.

    Attached Files:

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