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Sept 10: CDC 'conference call' including Unger and Lipkin

Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.

  1. Bob

    Bob

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    Considering that Dr Snell's latest paper supersedes his 2005 paper which is cited in the ME primer, and the results for VO2 peak do not seem significant in the latest paper (if I've interpreted it correctly), do you think the primer now needs updating?

    But she's actively trying to define subsets, based on her data. Yes, I agree that she needs to include objective tests. But if she does include objective tests, then I can't fault her approach of actively trying to define subsets, with large amounts of data. That is exactly what is needed, in my opinion. Of course it all depends on the honest intentions of the investigators, which is yet to be proven.

    Assuming honest intentions, for the sake of discussion, how would such a study not be beneficial, in your opinion, if it included two day CPET tests?

    Agreed, as long as Unger is aware of Dr Snell's 2013 CPET research results, and not just the 2005 paper which is referenced in the ME primer. But I still think her post-exertion cognition tests may prove to have some merit. Cognitive tests are a fairly objective indicator of cognitive performance, aren't they? (I do not know much about the merits of cognitive tests, but I assume that they can be helpful objective indicators of cognitive function. And if they are, then they may provide a useful objective indication of post-exertional symptom exacerbation.)
     
  2. Omar88

    Omar88 Senior Member

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    Even when i think this study is good but there are some questions about it that needs an answer :

    1) Prof. Paterson CSF samples used to be tested positive by PCR for HHV6 and now they said they didnt find that !! is that because the long time of frozen ?

    2) Dr. Montay used to test his patients under the HHV6 foundation instructions as i know because they were funding his studies and now his all samples too were clean for HHV6 ?

    3) If no herpes virus was in the blood why the antivirals had a good effect on patient ?

    4) How can they just ditch the 85% of positive samples for retroviruses and we know that retroviruses are accountable on one hand !! so what was that retro virus ? specially that a lot of patient who tried anti retro viral had positive results !

    I dont say Prof. Lipkin study is not good in anyway but some questions should have an answer :)

    Some times i feel like they want to find some common out come of all patients so they can provide a treatment one day without knowing the real cause of our illness
     
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  3. Andrew

    Andrew Senior Member

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    I was wondering about this too. The first question would be whether the controls had this level too. And my second question is whether these appear to be working retroviruses, as opposed to retrovirus remnants that litter our genome.
     
  4. Firestormm

    Firestormm Guest

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    In addition to what was said on the transcript (see links in my signature) we heard this from Lipkin in reply to a question from Wildaisy.
     
    Andrew likes this.
  5. Omar88

    Omar88 Senior Member

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    What about if this new retrovirus is causing some people sick but not all of us as many other viruses ?

    The percentage for this virus in healthy people should e known and this high number of CFS/ME patients infected with it should not be ignore.

    HHV6 doesnt have an answer from lipkin or Montaya now so whe should wait and see
     
  6. Daffodil

    Daffodil Senior Member

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    I don't think we should donate money until they agree to test gut biopsy tissue
     
  7. Omar88

    Omar88 Senior Member

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    I think we have as after this we have nothing ! but we should push for that
     
  8. Daffodil

    Daffodil Senior Member

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    I just cannot believe that millions of us are as good as dead and they are trying to test poo.
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Way more questions then answers???
    frustrating i think.
     
  10. Legendrew

    Legendrew Content team

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    It sounds crazy but the gut microbiome is quite an interesting area of researcher both inside and outside of ME. I'm not sure it will bring out the answers to ME but I think it could tell us quite a bit.
     
  11. natasa778

    natasa778 Senior Member

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    I just posted this on another thread, reposting ...

    The big finding was a decrease in levels of Interleukin’s IL-17, IL-2, IL-8 and in TNF-alpha – all of which have a role in pro-inflammatory responses. Lipkin believes these significant differences are worth follow-up in larger cohorts to better understand what they mean.​

    Interesting that lowered production of these very cytokines are associated with disease progression and immunological damage in HIV patients – HIV+ long-term nonprogressors retain the ability to make these cytokines, while individuals with progressive disease start producing less of Il-17, TNF-α and IL-2 after a while…


    Also interesting to read that this sudden downturn in cytokine levels happened after exactly 3.1 years in this patient
    Patient maintained a stable/low viral set point for 3.1 years before control of viral replication was lost … Gradual loss of functionality was observed in these responses, characterized by early loss of IL-2 …



    This paper could give us further clues on reduced IL-17 levels in chronic, long-term ME sufferers (also possibly linking to gut barrier breakdown)

    Studies in nonhuman primate models of lentiviral infection and in HIV-infected human individuals highlight pathogenic infection to be associated with loss of Th17 cells. IL-17 serves to maintain the integrity of the mucosal barrier. Loss of Th17 cells may permit microbial translocation across the gastrointestinal mucosa and thereby promote immune activation driven by bacterial lipopolyscaacharide, which is associated with disease progression. We demonstrate that …. We demonstrate that …. reduced Treg and IL-17 numbers is a feature of chronic HIV infection
     
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  12. Omar88

    Omar88 Senior Member

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    Yes but all those number are high in the first 3 years nearly ! i think its up to the time the body stop fighting something and immune system got a lot of damage
     
  13. natasa778

    natasa778 Senior Member

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    Yes same in HIV infection - high at first then plummet down

    (except in 'non-progressors' - those who don't get ill maintain normal/elevated levels)
     
    Omar88 likes this.
  14. Dolphin

    Dolphin Senior Member

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    I don't think we can really tell Ian Lipkin what to do. Unfortunately, especially after XMRV, I think he may be a bit wary of us. It's not like he doesn't have other things (nothing to do with ME/CFS) he could be doing.

    That's not to say that we couldn't look for some other researcher to do gut biopsies.

    The thing with research is that one has to look at various angles to see what will work: maybe what Ian Lipkin wants to do will give us big answers, maybe it won't. Me personally, I'm glad he's interested and if he has something he wants to explore, I'd like to keep him involved.
     
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  15. Kati

    Kati Patient in training

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    He also gave us lots of cues as of what to do, talk to congressman and government representant and demand funding. Am pretty sure he would approve a mass protest :)
     
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  16. SOC

    SOC Senior Member

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    I'd go for a march on Washington, DC. :D
     
  17. Firestormm

    Firestormm Guest

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    Or a bed-push :D
     
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  18. Dolphin

    Dolphin Senior Member

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    A possible problem with a protest in Washington is the numbers might not be too big: 500 (?) people (say) would be a great achievement in terms of the ME/CFS community but it's not exactly a huge march.

    But if people could use that energy to lobby their politicians, that'd be great.
     
    SOC likes this.
  19. SOC

    SOC Senior Member

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    Okay, "march" could be a bit much. A sit, maybe? ;)
     
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  20. aimossy

    aimossy Senior Member

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    hahaha definitely a big sit!! so good at that!
     

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