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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Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

Discussion in 'Latest ME/CFS Research' started by Ben H, Aug 9, 2017.

  1. A.B.

    A.B. Senior Member

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    So they're all finding interesting things? And subgroups, presumably?
     
  2. Sushi

    Sushi Moderation Resource Albuquerque

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    This is so exciting--they are actually talking about our illness! Thanks so much @Janet Dafoe (Rose49) , @AshleyHalcyoneH , @Ben Howell for being our bird's eye view. And thanks to Ron Davis and all participants for taking this on--we've been a lost cause for sooo long.
     
    Esperanza, merylg, MeSci and 31 others like this.
  3. Jill

    Jill Senior Member

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    Wow this looks like it's going to be a fantastic couple of days . I didn't think we'd see much til Saturday . Thanks to you all for posting pictures !
     
  4. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Lunchtime. Everyone in little groups talking science of ME/CFS. animated room full of buzz!
     
  5. Jesse2233

    Jesse2233 Senior Member

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    dangermouse and Deborah Kavounas like this.
  6. drewmaster

    drewmaster

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    I would ask one question, and one question only, of the great minds assembled at this conference:

    Based on where things are now, how soon do you think there will be an effective treatment available for ME/CFS?
     
  7. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Cindy Bateman showing off her wild socks. image.jpeg
     
    NK17, Esperanza, merylg and 35 others like this.
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Mark Davis now talking immunology.
    image.jpeg
     
    NK17, merylg, justy and 29 others like this.
  9. Snow Leopard

    Snow Leopard Hibernating

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    1. Everything
    2. Everyone

    3. I have lots of questions, but I will limit it to the following.

    It needs to be explained that the feeling of fatigue experienced by patients is not drowsiness and is not the pain that healthy people feel after exercising too much. More specificly, we experience the feeling that you cannot keep up this activity for very long, perhaps akin to when a person exercising has reached their limits.

    The first question is why aren't there any studies using known medical subgroups, to identify the biomedical causes of chronic fatigue?

    For example, a high proportion of EDS patients experience Chronic Fatigue Syndrome, likewise a majority of patients with Guillain-Barré Syndrome end up with persistent and severe chronic fatigue, despite testing negative on the typical neurological tests.

    A second questions, is has anyone at the conference explicit drawn out all the clues in one place, basically a series of things that a viable model of CFS or ME needs to predict. (eg onset triggers, onset kinetics, symptom kinetics, and notable biomedical findings)

    A key common element to all of the "models" that I have read, is that they are far too non-specific and there is no explicit or often even implicit relationship between the elements of the model and the actual lived experience of patients.

    Very few researchers seem directly consider the kinetics and relationships between symptoms in their models, and reduce these down to specific testable biological factors. For example, physical activity leads to cognitive fatigue with a delay (PEM), but increased mental activity doesn't lead to increased muscular fatigue in the rest of the body. Why?

    Similarly, activity leads to additional fatigue that is specific to the muscles that were used, this suggests to me that there is still a significant peripheral aspect to the experience of fatigue. Likewise, the reduction of performance on the 2 Day CPET indicates that Chronic Fatigue Syndrome is not merely an illness of disturbed central fatigue perception. It seems that the disturbance of fatigue signalling is happening at the periphery, rather than merely in the brain and so a key question, is anyone looking at the relationship between specific metaboreceptors (specific GPCR, tyrosine kinase receptors and serine threonine kinase receptors, and possibly scavenger receptors like CD36) and the sensitisation or stimulation of afferent nerves likely to be involved in fatigue signalling. The kinetics of symptoms I mentioned earlier can narrow down the possibilities. Likewise, the stimulation or antagonism of these receptors needs to match patterns observed, such as the metabolic findings by Fluge & Mella, the altered Acetyl Carnitine metabolism findings, the TGF-Beta and so on. Such models also must necessarily have explicit self perpetuating feedback loops, akin to the models that Jonathan Edwards has discussed for autoimmune illnesses.

    I'd greatly appreciate if Deborah, Ben or Rose ask these questions of the group.
     
    Last edited: Aug 10, 2017
    mariovitali, merylg, MeSci and 7 others like this.
  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Jared Younger up now. Talking about his new findings that he put out in his little video. image.jpeg
     
    NK17, Esperanza, merylg and 36 others like this.
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    Go Jarred! We have really appreciated his efforts to keep an open dialogue with the patient community.:thumbsup:
     
  12. Starlight

    Starlight Senior Member

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    Thanks Janet for posting the pics.this is what hope looks like to me today.im so thankful to all the people who are here so generously trying to figure out the intricacies of ME. It looks full of energy and buzz and I'm hopeful and thankful.
     
    merylg, MeSci, suseq and 15 others like this.
  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I'm sorry but I'm just an observer here. This is a scientific meeting and they are focused on their data and understanding the disease. There is no opportunity for me to ask a question.
     
    merylg, MeSci, simeyss and 14 others like this.
  14. JaimeS

    JaimeS Senior Member

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    @ChrisArmstrong and I are laughing at our blurry selves. Younger's presentation just ended. Very interesting so far!
     
    merylg, MeSci, simeyss and 23 others like this.
  15. trishrhymes

    trishrhymes Senior Member

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    I think the suggestion of asking questions applied to Saturday's live streamed talks, not to the scientists discussion days.

    Realistically I don't imagine there will be time to put detailed questions to the speakers from us watching on line. I'd be happy just to watch the talks, either on Saturday or later on You tube, and think about any questions afterwards and discuss them here.
     
  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes, I believe Leopardtail's Q was directed at Deborah Kavounas.
     
  17. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Big discussion of data sharing.
     
  18. Mij

    Mij Senior Member

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    I experience this.
     
    Binkie4, Countrygirl, anni66 and 4 others like this.
  19. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Discussion of finding bio markers. Maybe calling them bio signatures would be better.
     
    merylg, Katrina, MEMum and 26 others like this.
  20. Tom Kindlon

    Tom Kindlon Senior Member

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