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CDC Study Must Include CPET, NK Cell and Viral Testing, Advocates Insist

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 2, 2013.

  1. Nielk


    Bob - Can I ask you what your optimism of the CDC is based on? In what way have they proven to you that they have changed?
  2. Bob


    England (south coast)

    Well, first of all, it is only my own interpretation, and I may well have got it completely wrong.

    I'm basing my views on the current work the CDC are carrying out, and on what Beth Unger has said recently.

    In my opinion, the CDC are now doing the essential research that they should have carried out 30 years ago.
    If we look at Beth Unger's term in office from the point of view of a completely fresh start at the CDC, then I think she is doing exactly what she should be doing.
    Their study has started as an apparently basic project, but the basics needs doing, because of the CDC's history.
    Unfortunately Beth Unger had to start from basics, in terms of collecting empirical evidence and data.
    But the numbers of patients involved in the study (and the sources of the samples) means that it's not as basic as it appears.
    We want her to look for biomarkers, and she has now begun to do that.
    And they are looking at some potentially very helpful biomarkers. (Although the usefulness of the results depends on the exact methodology and competency, and the potential for the study to continue to evolve as necessary.)
    Hopefully their investigation of biomarkers will continue to evolve, and will be eventually comprehensive.

    Beth Unger is properly engaging with the ME patient community, by enrolling the CFS/ME expert clinicians into her study.
    She is now collecting data. Big data is precisely what we need, if we are to make progress, and it's something that only the government agencies are able to fund.
    She has also said that she is open-minded to the nature of CFS and ME, and any subsets, and that she will follow the data.
    The data is being collected from clinicians who most of us respect.
    I can't fault her approach, except to say that it's too little too late, but that's not her fault.

    I believe Beth Unger may be making a fresh start, and that we should give her a chance to carry out her research, which takes time.
    It will take time for the research to be carried out, but the study seems to be open-ended, and they are constantly adding on new aspects of the study, looking at biomarkers. It seems she wishes to continue with the research until they get some useful results.

    We are annoyed because the CDC constantly appear to be dragging their heals. We want them to adopt the CCC/ICC and to ditch stuff about CBT/GET. But if we look at it from Beth Unger's point of view, she is working for a huge bureaucracy, and she needs empirical data to make any evidence-based changes. And that's what she's looking for. Unfortunately, currently, CBT & GET have some evidence behind them, so it's probably difficult for the CDC to disregard them, especially because nothing else is widely available to patients.

    Yes, we should put lots of pressure on them to get it right, but I'm not sure if we should automatically assume that Beth Unger, and her team, are either corrupt or incompetent. Bureaucracies take a little time to change. Think of the CDC as an oil tanker turning around. I think we need to give Beth Unger another year or two of data analysis before we can judge her work. But what I've seen so far, I really like.

    If I was in Beth Unger's position, I would be doing exactly what she is doing. I'm not an expert, and perhaps I'm wrong, but I think it's a perfect approach. I would then move on to look for more and more biomarkers. I hope that once the basic research has been carried out that the CDC will then move on to the sort of stuff that Lipkin is doing, using her existing patients samples from the expert clinicians.

    My only motivation for posting something positive about the CDC is that I think we should not automatically assume that the CDC is the same as it was. Based on what I've seen recently, I think it's changed. I may well be wrong.
    Valentijn likes this.
  3. Emma


    Letter sent! Have also asked a few friends.
  4. Bob


    England (south coast)
    Deborah Waroff interviews Gunnar Gottsschalk (who runs Dr Peterson's research lab) about the CDC study.

    Gunnar says that Dr Peterson is involved in the CDC study, and that the data for about 75 of Dr Peterson's patients is included.

    He seems quite positive and enthused about the project, but not a great deal of detail is discussed.

    He doesn't seem to be aware that the CDC are planning, or have already started, some collection of biological/objective data, but perhaps that is because the CDC are using a smaller selection of the entire cohort for that part of the trial. So perhaps they aren't using Peterson's patients for biological/objective data collection.

    Keeping that in mind, Gunnar says he hopes that the CDC will now incorporate a sample collection for analysis into the project.

    They are moving onto Phase II of the trial.

    He also hints (it's not too clear) it will be an open-ended study, as I hope it will be, and that it might evolve in terms of the methodology.

    Gunnar Gottsschalk is Research Coordinator for Sierra Internal Medicine and Simmaron Research Inc.


    heapsreal likes this.
  5. August59

    August59 Daughters High School Graduation

    Upstate SC, USA
    The CDC is just now admitting that there are 10,000 more cases of Lymes disease than originally thought, but this is mostly blamed on very poor testing procedures to start with. Physicians not believing the patient has Lymes and then of course the physician does not report the Lyme case as they are required to do

    Most cases of Lymes are in a chronic state, which most physicians think a couple of weeks of antibiotics will cure!!!!

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