1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Kathleen and Alan Light get 1 million dollars for research

Discussion in 'Latest ME/CFS Research' started by Boule de feu, Sep 21, 2011.

  1. Boule de feu

    Boule de feu Senior Member

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  2. Marco

    Marco Old blackguard

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    Great news.

    One slight concern is that I would like to see more consideration of the possibility that their findings may be appropriate to the underlying pathology (i.e. a biologically necessary warning sign) rather than an abnormal 'signalling' response to normal stressors.

    Both are reasonable possiblities (particularly given the abnormalities in mitochondrial respiration found in ME/CFS) and merely seeking to block or attenuate these signals might just do more harm than good.

    It would be reasonably straightforward to build some measure of mitochondrial function into their trials.
     
    Dolphin and WillowJ like this.
  3. fla

    fla Senior Member

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    Thanks for posting. This is mainly why I come to these forums. I feel helplessly trapped by M.E. like the Chilean miners were and stories like this are the sound of drilling overhead. Hope...
     
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  4. Boule de feu

    Boule de feu Senior Member

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    It's been a pretty good week... first, the 10 millions $.
    The XMRV news.
    And now, this.

    I found out that I had ME in 2006. Back then, when you would google CFS, you would get a psychiatric explanation for what you had. It was pretty depressing. Especially, if you knew that you were not suffering from depression or somatoform disorder. Today, when you type CFS, the psych part is not there anymore (almost non-existent). It took 5 years to get there. The best is yet to come.

    Don't despair. We will get there. =-)
     
  5. Gemini

    Gemini Senior Member

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    Marco,

    You make a very good point. Like you I hope it will be
    considered as they seem to have potential treatments in mind.
     
  6. liquid sky

    liquid sky Senior Member

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    They are studying how to distinguish CFS patients from Fibromyalgia patients. Why?
     
  7. CBS

    CBS Senior Member

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    Liquid Sky,

    Your quote from the article is accurate but the statement itself was incomplete and the author (keep in mind that this is student run newspaper) buried the lead:
    Great news. If you haven't already done so, their gene expression work is impressive and well worth reviewing as is there recent paper on the genetic heritability of CFS.
     
  8. Nielk

    Nielk

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    What XMRV news?
     
  9. Boule de feu

    Boule de feu Senior Member

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  10. Nielk

    Nielk

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    Thanks Boule de feu. I did not see this. This means that it is possible for humans to get XMRV from murines?
    Neuronal cells - are they only in the brain, spinal cord and ganglia or are they found all over the body?
     
  11. Cort

    Cort Phoenix Rising Founder

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    Its great news that they feel far enough along and confident enough to create a start up to differentiate CFS from other fatiguing disorders, depression. I assume that that means they've convinced some investors to pitch in...Plus there are the groups within ME/CFS that they are differentiating.

    The NIH can provide alot of money when they are convinced....apparently they are convinced. :)
     
    WillowJ likes this.
  12. ixchelkali

    ixchelkali Senior Member

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    I'd like to learn more about the start-up company that's hoping to market a test to differentiate between ME/CFS and other conditions. I'd also like to know what it does with patients who have comorbid ME/CFS and fibromyalgia.
     
  13. liquid sky

    liquid sky Senior Member

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    I was wondering about the co-morbid conditions too. The article said 70% of those with CFS also have FMS. That's a lot. I have always thought they were probably caused by the same thing.

    @CBS, I have only glanced at their paper, not too sure what they found. Long papers are hard for me to endure. Inheritance does not explain the outbreaks or the sudden viral onset. My life changed literally overnight. Started out very severe and remain there after 19 years.

    A diagnostic test would be great. It would have to include neuroinflammation for me because that is my worst problem. I hope something good comes from the study.
     
  14. CBS

    CBS Senior Member

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    LS,

    The studies are small but provocative. Big shifts in the levels of gene expression that, as has been mentioned, differentiate between Fibro, ME/CFS w/ Fibro and Me/CFS without Firbro., etc. There may also be other sub-groups within groups. The NIH grant ought to allow them to look for other genetic markers (so far they've only taken a look at what they felt was the most promising candidates - there is a lot more that they want to look at) and as just as importnat, if not more so, the larger sample sizes made affordable by the grant should help them determine if these preliminary sub-groups are stable.

    As for the heritability, that study is interesting/suggestive but needs quite a bit more work (and clearly does not provide a comprehensive explanation for ME/CFS). For starters (and this is huge), all that was looked at was whether or not people diagnosed by their doctors with CFS (no specific criteria mandated due to the nature of the study) were more likely to have a 1st, 2nd, or 3rd degree relative also diagnosed with CFS. The data examined was a patient registry in Utah that utilizes the genealogy compiled by the Mormon church and has been made available to research groups in the state. Number of records examined is huge (records for roughly 200,000 patients were examined - making the results likely to be quite stable). The bottom line was that the "Relative risks for first (RR = 2.70), second (RR = 2.34), and third degree (RR = 1.93) relatives were significantly elevated." That the RR is almost two for third degree relatives suggests that the increased risk for CFS is more than just environmental. Again, the study was suggestive and the Dx criteria was nearly non-existent but they were trying to find a cause, they were just looking to see if there were hints of a genetic component and this suggests that there might be a widespread genetic vulnerability.
     
    SOC likes this.
  15. Boule de feu

    Boule de feu Senior Member

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    Fascinating stuff! Thank you for sharing!
     
  16. liquid sky

    liquid sky Senior Member

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    Thanks for the summary, CBS. It does seem to run in families. I have a sister affected also. I am not sure if that is due to genetics or exposure to an infectious agent. I also have a son with seizure disorder and I see some of the sub-clinical signs of illness that I experienced before becoming ill in my other children also.

    I just hope that nothing further develops in my kids. We really must find treatment that helps before another generation suffers.
     
  17. Megan

    Megan Senior Member

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    It would not surprise me if this does run in families, my mum has FMS and I have CFS. But I also think that someone with one of these illnesses is far more likely to be properly diagnosed if a first order relative already has it, since that will have already heightened awareness of the possibility within the family.

    I know I would have been running around telling people I still had glandular fever for years if my mother hadn't put screws into me sooner to go and see a more informed doctor. I really thought CFS was an old wives tale at the time.

    When reviewing medical statistics this would be a significant complicating factor that would need to be separated out from genuine genetic or other modes of transmission.
     
  18. CBS

    CBS Senior Member

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    Yes it would. Very good point. A doctor's predisposition towards recognizing "CFS" could also come into play and if that's the case, are relatives likely to be seen by the same doc?
     
  19. Dolphin

    Dolphin Senior Member

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    Here's a quote from their 2011 paper:
    However this group (anyone with CFS) was different from the FMS only group.
     
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