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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. SpecialK82

    SpecialK82 Senior Member

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    Wow - Ian Lipkin is a warrior, so impressive.

    It was interesting, I thought when Dr. Lipkin was listing all these agents that he wasn't finding in either the plasma samples (Montoya) or from the spinal fluid (Peterson), and that he was finding irregular expression of cytokines, that he was going to conclude that it looked more like an auto-immune problem. (He even mentioned that their are medicines that will lower cytokine expression. HOWEVER - he was very firm in saying not to go out and ask for medicines to lower cytokines - they are still trying to understand why this is happening.)

    He says later on that he still thinks this disease in from an infectious agent! And, he explained that they need to go on and perform a microbiome study that involves fecal samples. He said it is very important to understand what is going on in the gut (I'm paraphrasing here) and this study could be a big turning point, like it may actually find the causative agent. (Someone please correct me if you understood it differently)

    This study is extremely expensive and they don't have the funding to finish it, they only have 10% of it. They are collecting patient samples now and moving forward. I wish he would have told us how much he needed - it would be a good follow-up question for him.

    He said part of the reason that we don't have the money is because sequestration (US budget cuts) and everything is very, very tight. He urged us to write our Congress representatives and persuade them to fund this study. I do think we patients could put together a much stronger letter if we could get some facts and preliminary findings from Dr. Lipkin and again, how much is needed.

    Cross-posted with Sasha below:

    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.

    I couldn't agree more!!



    -----
    leela, aimossy, waiting and 9 others like this.
  2. August59

    August59 Daughters High School Graduation

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    We need to make sure we can get our sincere thanks passed along to Dr. Lipkin and I have never really pushed my Congressmen on an issue on this one. It just appeared to me that Dr. Lipkin was excited about this study and he believes there definitely is something there. He did mention the cytokine and chemokine differences between plasma and spinal fluid was in a way not what they expected however once the study was complete there may be some medications to modulate some of these and at least bring some symptom relief, but he in no way would step out and confirm this.

    It was mentioned in an earlier post that one of the next phases of the study, might have been microbe study, was where he felt strongly that there be even more confirming differences showing that we are a definitely ill population. I think Dr. Lipkin showed as sign of being excited about being a part of this study and wants to find the key. He is looking into possible past infections as well there was some collection situations with the fecal samples, but that had been remedied and he seemed to me that there will be some more differences found there as well.

    He stated several times that with the sequestering going on with the federal budget that the HHS has virtually locked it's doors right when he has made it to the most expensive part of the study. He also made it known that we are partners in this study, but I wasn't sure how to take it except to mean that if we can muster up private funding. I think this will be my donation for the year. He has the tools, the help and the patients to pull off the best study we have ever had. I don't think we will ever get another one like this, but hopefully want need it if he can find the things that will at least get us going in the right direction. Again, from him he did state that our immune system isin constant activation mode or something close to that.
    heapsreal, Kati, snowathlete and 2 others like this.
  3. SpecialK82

    SpecialK82 Senior Member

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    He mentioned that we needed to ask for funds from the NIH and the CDC which was interesting since the CDC was hosting the call.
    snowathlete, Valentijn, vli and 5 others like this.
  4. Sasha

    Sasha Fine, thank you

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    I really think we should work with him on a letter. I wouldn't like to see everyone suddenly just piling in on their congress person and making a variety of different demands. We need a unified campaign and one that is informed by Lipkin himself, if he's willing - he's clearly keen to continue and rather than guess at what he wants us to ask for, I think it would be best for our advocates to work with him on a letter.

    Easy for me to volunteer our advocates, of course! :whistle:

    But I think it's worth taking a couple of weeks if necessary to do this right and then have a superb, agreed-on letter to send to congress people.
    leela, Iquitos, beaker and 5 others like this.
  5. Mesurfer

    Mesurfer

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    He emphasized the lack of government funding. he spoke about the NEED for activism and compared it to the early HIV AIDS era. He admitted he was "passing the hat" for more private funding so his group could study the important microbiom and is encouraging everyone to put pressure on senators, congressmen.
    Iquitos, vli and beaker like this.
  6. Dolphin

    Dolphin Senior Member

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    Yes, for years now the CDC has its own CFS budget - it doesn't have specific budgets for lots of conditions.

    And I think for the last few years the CDC has been looking around for things to study: there have been problems with their random-digit/registry studies they had concentrated on for over a decade.

    CDC is one of the main agencies to look at infections/pathogens so it would seem they could be a useful source for money.
    Kati, snowathlete, SpecialK82 and 2 others like this.
  7. Daisymay

    Daisymay Senior Member

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    Just got an email from the CDC:

    "You will be able to access a synopsis of the presentation on the CDC CFS website at http://www.cdc.gov/cfs/meetings/index.html. However, it will probably be about 4 weeks or longer before this gets posted. We first need to receive the recording, translate into a script, and then submit to CDC clearance before being able to post."
    Dolphin, snowathlete and SpecialK82 like this.
  8. Mesurfer

    Mesurfer

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    Is a protest at the fall cfsac in order?
    Kati, snowathlete and vli like this.
  9. RL_sparky

    RL_sparky

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    If anyone recorded todays conference call I'd appreciate if I could possibly get a copy of it. I emailed the CDC but they are not going to post a recording only a synopsis, in about four weeks.
    beaker likes this.
  10. vli

    vli

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    Yes I was excited when i heard him compare us to the aids era too, but right away felt depressed bc frankly the reason aids activism worked was because a) even aids patients had more energy than us to rally together and pressure the gov, and b) aids patients were *dying* of HIV. QUICKLY. I know there're ppl here who've countered me and said PWCs were also dying of ME, but we MUST face that we have a MUCH harder task because we're not dropping like flies SPECIFICALLY like aids patients were. Harsh truth.
    leela, Dolphin, SOC and 5 others like this.
  11. readyforlife

    readyforlife Senior Member

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    Very well put!!! We need a unified campaign. This is something if done right could maybe make a difference and it wouldn't cost us money. Just copy, paste and send.
    snowathlete likes this.
  12. Sasha

    Sasha Fine, thank you

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    I just emailed to ask them to post a recording, on Youtube if nowhere else. I don't see the problem. A 12-year old could post it on Youtube. You'd think they'd have a channel.

    Edit: Oh...

    This is an auto-reply from an unmonitored mailbox and CDC-INFO will not respond. If you have questions or comments, please send them via our new online form at: http://www.cdc.gov/cdc-info/requestform.html
  13. Nielk

    Nielk

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  14. Sasha

    Sasha Fine, thank you

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  15. Sasha

    Sasha Fine, thank you

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    Has all that $10 mill gone on this study, though?
  16. vli

    vli

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    OH, YES!!! SORRY you're totally right. ME brain!!! unfortch i don't think we can find out how much specifically the pathogen study is using, though.
    Sasha likes this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SpecialK82 wrote:

    I remember him saying something like, "If I had to bet, I'd bet that the action is going to be found in the microbiome." (paraphrase)

    But, they are just starting to collect samples. Their first attempt was using swabs which didn't work. Now they are starting again collecting actual fecal samples.

    Sushi
  18. snowathlete

    snowathlete

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    Thanks everyone for the posts about this. I have so many questions as a result of what he has said that I wouldnt know where to start. As I have said before though, it really is great that we have Dr Lipkin looking at our disease.
    Sasha likes this.
  19. snowathlete

    snowathlete

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    Couldn't agree more. We need an effective response, not a knee-jerk one, or several. Ideally different groups, organizations and individuals will come together and seek his input first and then do something in as united a way as possible. That would give us the best chance of a good outcome.
  20. bel canto

    bel canto Senior Member

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    It's really frustrating that in this era of easy access to you-tube, no one at the CDC put thought into the fact that access to this broadcast would be very important to this community. If it needed a "review", that could have been set up to happen immediately.
    beaker and vli like this.

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