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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The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

Discussion in 'General ME/CFS News' started by Simon, Aug 14, 2018.

  1. Simon

    Simon

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    Part 2 of the blog about Dr Ian Lipkin's Collaborative, now up at ME/CFS Research Review

    The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion

    The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin's NIH-funded Collaborative - the Center for Solutions for ME/CFS – is focusing primarily is on how problems in patients' gut microbiomes might drive the disease, his team is also probing deeply what happens when patients exert themselves. Lipkin says that the exertion studies are so important that the Collaborative will devote a third of its research resources to it.

    When I spoke to Lipkin about the Collaborative’s work, he also said he was very hopeful that there would be real progress for patients within five years. More on this later in the blog.

    Exertion studies
    The Collaborative has a simple idea for exploring PEM: use two different exertion tests that should provoke symptoms in patients and then see what happens, both to how patients feel and to their biology.

    If biological changes, such as those to cytokines, ramp up along with symptoms then it’s more likely that the biological changes are directly related to the illness and should give clues as to their role. Any insights into the nature of PEM could lead to a much better understanding of ME/CFS.

    bike-CPET-F.jpg
    ....

    The crystal ball

    I asked Lipkin how he thought things might look at the end of the five-year NIH funding for the Collaborative’s research program.

    He was bullish about the prospects for significant progress. He made a comparison with the situation with cancer treatment 20 years ago.

    He believes that in ME/CFS, as with cancer, a group of similar-looking patients will prove to have different causes or triggers for their illness but will share a final common pathway: “ME/CFS”. As with cancer, he expects they will find the specific cause of ME/CFS for some groups of patients quite quickly – the low-hanging fruit.

    ...

    read the full blog
     
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  2. Simon

    Simon

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    working link for this: http://bit.ly/2KQHuCrysB


    https://www.facebook.com/topmecfsresearch/posts/526898891098399
     
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  3. percyval577

    percyval577 Senior Member

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    Hallo @Simon ,
    if you speak to him you may ask him about this:

    iNOS -> NO <-> ACh
    .......(<--------------).....possibly via hypothalamus.

    It can be influenced by nutrition and seems to work (so far for me).
    There is also the possibillity that the gut microbiome is requested for some purpose.
     
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  4. alex3619

    alex3619 Senior Member

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    I currently think this is highly likely. Its also important to get an easy PEM biomarker so we can avoid bogus claims and research.
     
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  5. Learner1

    Learner1 Forum Support Assistant

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    I fear the problem with all this research is this, which I suspect is very true:

    As patients, getting treatment will be difficult if we are all unique and not something that a nice, neat standard of care can be built around for identical widgets...
     
  6. *GG*

    *GG* senior member

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    Why would antivirals be used to treat the microbiome? Thought that was all about bacteria?

    GG
     
  7. Learner1

    Learner1 Forum Support Assistant

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  8. bertiedog

    bertiedog Senior Member

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    Just to say that if indeed some of us are longterm infected with borrelia and co-infections would his research help us too? The fact that it is another 5 years away means its pretty useless for me unfortunately.

    Pam
     
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  9. Gemini

    Gemini Senior Member

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    Great find @Learner1.

    Along this line, Quadram Institute Biosciences reported at the London Conference in June they're studying "viruses" in the microbiome of severe ME/CFS patients. @GG, thanks for raising the question of viruses.

    A detailed summary of their study objectives is in the Iimec13 Report here:
    www.investinme.eu/Iimec13.shtml#report

    PhD students Katherine Seton and Fiona Newberry did an outstanding job presenting their studies. Presentation can be viewed on Iimec13 DVDs which can be ordered here:
    www.investinme.eu/Iimec13.shtml#dvd

    @Simon, hopefully Lipkin will keep an eye on this interesting Quadram study; as a "virus hunter" and also working on the microbiome he may find it intriguing! Thanks for the excellent summary of his research.
     
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  10. alex3619

    alex3619 Senior Member

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    I have been asking for this for decades now. Nobody seemed interested. Its good its happening, but it was an obvious research direction when I first posed this issue at the turn of the century.
     
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  11. Murph

    Murph :)

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    The "virome" is a hot topic. There are more viruses than bacteria in your gut - they are specific viruses called bacteriophages that infect bacteria. It is plausible guts are trapped in dysbiosis because rampaging bacteriophages keep the good bacteria down. For this reason, the virome is getting a lot of attention as understanding of the microbiome matures.
     
  12. Murph

    Murph :)

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    Simon said:
    Any insights into the nature of PEM could lead to a much better understanding of ME/CFS.

    I third this. Seems to me that if we can track exactly what cytokines and signalling pathways and metabolites go awry after exercise we may be able to pinpoint what is going wrong during exercise.

    The only thing I'd like to see is them taking blood far more frequently post-exercise than just 24h later. I think there would be huge insights from watching the systems fall apart in real time. There's a reason they film car crash tests in slow-motion, rather than just crashing the car and looking at it later. You don't just want to see the end result. You want to see how it failed.

    It is doubtless a challenge, but in this study on acromegaly they were able to take blood (2mL) every 10 minutes for 24h:

    https://www.ncbi.nlm.nih.gov/pubmed/27023448

    They only wanted to measure one hormone though. Obviously more blood makes running more tests easier. I wonder if, say, 10mL hourly would be useful at all, or if even more is possible without reducing blood volume too much.
     
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  13. alex3619

    alex3619 Senior Member

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    Some new testing methods only require really tiny amounts of blood. Regular draws of tiny amounts, especially if blood volume is controlled by adequate liquid intake, should be doable.
     
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  14. Simon

    Simon

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    The microbiota is made up of bacteria but also viruses and fungi and Lipkin is is looking at all of them.
     
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  15. HowToEscape?

    HowToEscape? Senior Member

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    Would you rather have difficult to obtain treatment that usually helps, or bureaucratic by the book treatment that usually harms?
    -------------
    In the latter case, you will be deemed to have failed the treatment, perhaps because of Obstinate Sickness Syndrome or another yet to be determined malady. Nature does not give one flying F what's convenient or easy for us. If it were possible for Nature to have utter contempt for something, it would be attempts to shape it (such as medicine) via the arrogance of maintaining a mammal as though it were a simple mechanism.
     
  16. Tally

    Tally Senior Member

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    How about neither? I would rather Dr. Davis and Dr. Naviaux are right and this is all one illness which will be curable with one cure, and the differences we are seeing in symptom presentation and severity are due to genetic differences.

    I mean, as long as we're daydreaming :)
     
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  17. Learner1

    Learner1 Forum Support Assistant

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    I'd prefer treatment that treats the problems I have, difficult to get or not.
    I wish they were right, but with the number of problems my doctors have found, I am very doubtful that there's one cure.
     
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  18. perrier

    perrier Senior Member

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    Dear Pam
    Well, my experience is such that often academics will work within the parameters of the grant set up; so, if Dr Lipkin got cash for 5 years, they will work within that. Even if they solved it in say 2 years say, they are not going to give up the grant money. There are lots of people involved and they need their salaries, etc etc. Then comes round two, and more grant money is requested.

    For the patients, however, this is an eternity, this 5 years. The patients doesn't give a fig for these academic arrangements, as life by the minute is hell. And some patients will give up the ghost, for sure. There are of course, folks like Dr Davis, who understand the desperation of the ill. And these are the ones I look to.
     
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  19. Vassie

    Vassie

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    I truly hope when they develop a gold standard diagnostic test it will be something that doesn’t involve an exercise challenge!

    First of all it’s impossible when you are severely sick.
    And >no extra torture< is a good idea anyway, no matter what your level of functioning is. It’s ok to suffer for the sake of science, but not for standard diagnostics.

    At that, when you are functioning on a higher level it can be very hard to predict exactly how (and when!) your body will react to exercise. The same exercise or activity can have a different effect on different occasions in my experience and I’m still not sure why.
    I haven’t been able to figure it out, at least, but I’m not a scientist obviously. It’s unpredictable imho. Maybe they have found a sure way to induce exactly the right amount of PEM at exactly the right time.
     
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  20. Tally

    Tally Senior Member

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    Poison the source and see how many things go wrong downstream
     
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