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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Jarred Younger on CFS subgroups (video)

Discussion in 'General ME/CFS News' started by mango, Jun 20, 2017.

  1. mango

    mango Senior Member

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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Says that preliminary analysis of tracking metabolites for 25 consecutive days in the same patient seems to be revealing subtypes.

    In about 1/3 of the patients fatigue correlates with rising and falling C reactive protein, which indicates an ongoing infection of some sort.

    In about another third, fatigue tracks with fractalkines, which indicates a malfunctioning immune system.

    ETA: I wonder if they tracked anything other than "fatigue".
     
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  3. trishrhymes

    trishrhymes Senior Member

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    I think this is a fascinating study. I hope it's not too long to publication so we can learn more detail. He explained that the study is ongoing, and he can't reveal too much because that would effect publication.
     
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  4. Deltrus

    Deltrus Senior Member

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    I love how these researchers are giving us videos. They feel so much more wonderful than text. Ty Jarred Younger.
     
  5. hixxy

    hixxy Senior Member

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    I hope so. It's a shame when researchers measure disease activity/severity with only "fatigue".
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    This is fascinating, and I agree, researchers who are willing to make short videos for patients are a huge boost for us--thank you Dr. Younger!:thumbsup: @Janet Dafoe (Rose49)
     
  7. Jesse2233

    Jesse2233 Senior Member

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    One of my favorite researchers
     
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  8. taniaaust1

    taniaaust1 Senior Member

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    that's a great finding . The study finding starts from around the 2 min point
     
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  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    He is an incredibly kind person. I'm sure he did this just to give us hope.
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    He really is. He once responded personally to an email from me asking about genetic determinants of LDN response
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    The substance of the video is really interesting and makes sense

    Some thoughts

    - what are the p values of CRP and fracktlekine correlation with fatigue? Are these patterns meaningful or is it attractive noise? We will likely find out when he publishes

    - if the pathogen of the CRP subgroup is in tissue or is yet to be discovered it won't show up in his daily blood draws. Shotgun metagenomics could solve the second issue, but you can't really do a stomach or muscle biopsy on someone every day for 25 days

    - the dataset is small so this is very preliminary (~8 per subgroup), but subsequent cohorts will hopefully bare this out

    - are these analytes causative and/or could suppressing them be ameriolative of symptoms? are these the blood borne factors that Ron Davis has found to make cells abnormal? Or are they bystanders or collaborators with something else?

    - and of course, what to make of the other 3rd with no correlation yet discovered
     
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  12. Jesse2233

    Jesse2233 Senior Member

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    More on fractalkine, not surprisingly it's related to microglial cells

     
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  13. Valentijn

    Valentijn Senior Member

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    Also of interest is that the fluctuating CRP values aren't necessarily elevated out of a normal range at any point. He proposes that this could be due to a low-level biological infection and/or an infection trying to emerge.

    More specifically with regards to fractalkine, he says it's elevated in a lot of autoimmune and chronic inflammatory disorders where there isn't an infection.

    He's still analyzing the group which has neither the CRP nor the fractalkine tracking with their fatigue symptoms, to look for identifying characteristics. Their symptoms might be related to different immune markers, or driven by energy metabolism, endocrine disregulation, etc, instead of the immune system.

    He's just started digging into this data, and is definitely going to follow up on it. He hopes they can develop some objective tests to distinguish between subtypes to use more targeted treatments.

    For the CRP group, they need to start looking for viruses and bacteria, and any fluctuations of those.

    They're starting with a large new cohort to see if these results replicate.

    He can't give more information, due to upcoming publication in a scientific journal. But he'll continue giving us updates with little peeks into what's going on.
     
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  14. Kati

    Kati Patient in training

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    We are so lucky to have Jarred as researcher for ME and FM. He is highly intelligent and i am not sure if it's luck or hard work or both, but he has definitely risen and built a strong team at UAB, from scratch.

    Looking forward to the paper, and the next ones after that. Also thankful he is willing to collaborate with Dr Davis and others. Great minds all together can litterally make miracles.
     
  15. arewenearlythereyet

    arewenearlythereyet Senior Member

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    It does give you hope doesn't it? It is interesting that "third" of the population seems to be cropping up again and again.

    It does make you wonder what third you are in doesn't it? I wonder whether onset of symptoms could be linked to subtype in a more detailed way once we know more.

    Does anyone know when he plans to publish?
     
  16. justy

    justy Donate Advocate Demonstrate

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    I'm so greatful to Dr Younger for reaching out to patients and making a video. It makes all the difference to us, sat at home, that we can really begin to see what is going on and it gives us hope.
     
  17. Londinium

    Londinium Senior Member

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    Lol, I'm glad I'm not the only person who watched it and immediately went 'I wonder what the p value is?' ;) I can't wait for the paper to come out to also see what the r values are for the CRP/fractalkine subgroups as a whole. The data presented looks like a pretty high correlation coefficient to my untrained eye, but it'll be interesting to know if they are the ones selected because they show the correlation best or whether they are representative of the subgroup as a whole.

    I'm naturally cautious when findings apply to subgroups and are based on a lot of variables being tested - especially due to funding limitations on ME/CFS research meaning cohort sizes are small. It's encouraging to hear the team are replicating in a wider cohort - if they stick to looking at CRP and fractalkine only that should provide a lot more statistical power.

    This paper provides some interesting titbits as well. My brain is still a touch fried as I'm recovering from a relapse but one of the things that jumped out was the way it causes white blood cells to attach to endothelial cells. I'm making a massively speculative leap but could this explain some of the endothelial dysfunction seen in some ME/CFS patients?
     
  18. msf

    msf Senior Member

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    So, does Rituximab really help that 1/3 with the fractaline-fatigue correlation? And does it slightly help the CRP group or the remaining 1/3?
     
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  19. msf

    msf Senior Member

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    In terms of the ┬┤infection┬┤ group, I think the CRP changes are most likely a response to variations in LPS levels as a result of alterations in gut permeability.
     
  20. AdamS

    AdamS Senior Member

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    Thank you Jarred Younger, this gives me huge hope! So kind of him to make this video :)
     

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