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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. Nielk

    Nielk

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    work with Montoya
    look for infectious agents - plasma samples in order to look at genetic data
    agents are: HHV6, Herpes simplex 1 & 2 , EBV, parvo, enterovirus, retrovirus, CMV, west nyle and about ten more
     
  2. Nielk

    Nielk

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    samples 285 cases and 201 controls
    HHV6 - 4 cases and 2 controls
    4 HHV6b and 2 HHV6a very small proportion found in CFS potential confound but pretty much meaningless

    no others found

    confident that everything would have been detected.

    found 85% retroviruses in the pool - no conclusion that there is a relationship to disease. doesn't think it will pan out
     
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  3. Nielk

    Nielk

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    in plasma and spinal fluid - 0f 200 CFS and 200 controls - techinique luminex

    divided bet patients less 3 years and more

    In plasma found:


    found substantial diff biomarkers

    allergy aspects

    pro inflammatory cytokines irregularities
     
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  4. Nielk

    Nielk

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    spinal fluid also showed cytokine differences

    Presently looking for agents - viruses, infections in 400 patients looking for bacteria with specific method ?
    looking at fecal material - very expensive and takes a long time - this is early days - need funding
     
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  5. Nielk

    Nielk

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    budget at NIH very limited
    immunological essays to look a previous infection via LITS method - looking at antibodies

    peptide erray looks at all potential viruses

    challenges we face - funding
     
  6. Nielk

    Nielk

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    We have funding for about 10% of what's needed.

    Lipkin is eager to pursue the microbiome work - he thinks that that's where we will find answers - very expensive though
     
    vli likes this.
  7. Nielk

    Nielk

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    analyzing the data they found a great difference between patients ill less than 3 years and more than 3 years.
     
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  8. Nielk

    Nielk

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    pressure on senators and congressmen for more funding in research is needed
     
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  9. Sea

    Sea Senior Member

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    Did he say there was more to find in those who have been sick longer? Or more in those investigated earlier?
     
  10. Nielk

    Nielk

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    I'm not sure if it's a matter of more but just different irregularities - mainly in cytokines. .
     
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  11. beaker

    beaker CFS/ME 1986

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    I didn't hear him say, only that's where cut off was. I missed first part though.
    INteresting thing is, if someone is going to get better, that's the time frame they usually do. The long standing me/cfs docs have long said that. Now there is data to go along.
     
    snowathlete, vli and Sasha like this.
  12. Sasha

    Sasha Fine, thank you

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    Well, my sister phoned just before the start time so I missed the whole thing! :aghhh:

    Big picture, anybody?

    Thanks for those 'tweets', Nielk!

    I thought he was testing for shedloads of viruses but that doesn't seem like a very long list.

    I've got a special interest in HHV-6 - was that PCR coming up negative, as opposed to antibody titres? HHV-6 virus particles are supposed to hard to detect, even in tissue (since there may not be any in the particular sample you've got). Anybody got any views on the HHV-6 findings?

    I was surprised he gave out so much info! Did he say anything about publication plans?
     
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  13. beaker

    beaker CFS/ME 1986

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    He said something about publishing the data that they have. He seemed rather ambiguous.
     
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  14. beaker

    beaker CFS/ME 1986

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    Comparing now in ME/CFS research to early year AIDS research. I've been sick for 27 years. I have been in studies from the first year on. Well now studies don'w want those who have been sick this long.
    I have a knife in my heart. This isn't early. It's late. And I know many more who have been sick longer.
    Why didn't he make more noise in 1997 when he published ?
    Crap. I know better than to look back. Doesn't do any good.
    Don't mind me. It's been a long haul, some days are harder than others.

    ETA: Thank you Nielk for the updates. I got in on the call late.
     
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  15. Sasha

    Sasha Fine, thank you

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    Did they say when they'd post the recording?
     
  16. readyforlife

    readyforlife Senior Member

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    How do we go about trying to get more funding for Dr. Lipkin and his colleagues? So he can pursue the microbiome work, he thinks that that's where we will find answers. He brought it up three times that he needs money to fund this project and he has enough money for 10% of the study.

    It would be great if someone on this forum who isn't as brain dead as I, could put together a letter that we could copy and paste into emails to our congressman. And maybe make a list of people we could email this letter to and keep emailing them daily until we get something done. We have this great researcher who seems to be onto something and needs more money. But instead our government wants to spend our tax dollars on high end vacations, lobster dinners, catered breakfast meetings etc... Sorry just a little bitter.
     
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Interesting that he said that he'd guess that the microbiome is where the action is going to be.

    But, they are only in the early stage of collecting fecal samples. :(

    Sushi
     
  18. vli

    vli

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    I think he said the stuff he was prepping to publish would only be the biomarker stuff he touched on in his talk. Not abt pathogens(?).
     
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  19. Sasha

    Sasha Fine, thank you

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    Was he saying that we ought to be getting congress people to get more money for ME/CFS research for the NIH and CDC? If so, would there be any guarantee that they'd fund Lipkin to do the other 90% of the study? Is there something more direct to ask for?

    Maybe we have advocates who could work with him to come up with a suitable letter, even if he was just advising rather than signing. He has a much better idea of how stuff works than we do. Does anyone have a contact? Nielk? medfeb? jspotila?

    We need to do this well, not on the fly.
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Cytokines differences was one thing he said they would be publishing.

    Sushi
     

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