1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Article: CFIDS Association Commits to Open Science Movement, Seeks to Bolster CFS Research Field

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 28, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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    Yes, very inspiring video :).... the CAA may be trying out something similar with their Knowledgebase program. They will be coming up with potential biomarkers and 'shopping them around' and ultimately the Knowledgebase will be open to all researchers and they can all take their shots at it. The key is that Dr. Vernon is committed to spreading as much information around as she can and getting as many researchers involved as she can and that's what the guy in the video did (albeit with cancer).
  2. Andrew

    Andrew Senior Member

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    What would be great is if the physicians sent a check list that covers ICC and Fukuda so data could be crunched according to symptom clusters, across studies. The reason for Fukuda is for interpolation with past studies, and continuity with existing FDA testing. The reason for ME-ICC is it's the most targeted criteria. OTOH, if there is a way to determine Fukuda from an ME-ICC checklist, then that's all we need.
  3. jspotila

    jspotila Senior Member

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    I think the key issue here is the role of physician diagnosis. The CAA BioBank requires previous diagnosis of CFS by a physician, and let's face it - the vast majority of physicians in the US will use the Fukuda criteria, not CCC. If you eliminate all the patients who have been diagnosed using Fukuda, then you lose a huge part of the population (including me!). I was diagnosed in 1995 using Fukuda, and I have PEM and cognitive problems. Requiring CCC would require me to get diagnosed again by one of the very small group of CFS experts who are familiar with CCC. Given that none of them are near my location, and the difficulty of travel, there would be very significant barriers to my getting a CCC diagnosis just to get in the BioBank. The CAA BioBank requirements try to compensate for the fact that most docs use Fukuda by adding the PEM and cognitive requirements. That should help filter out the primary depression and other groups swept in with Fukuda.
  4. Andrew

    Andrew Senior Member

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    There is a way around this. Instead of simply throwing up their hands, the CAA could set a standard regarding the samples they take. I think what a lot of us would like to see from the CAA is responsible leadership that sets a high standard.

    Now, if CAA has only samples from reputable doctors like Klimas, Peterson, etc. then there is nothing wrong with that. But it would be extremely helpful if CAA worked with doctors to get them to complete a checklist that allows identification of ME-ICC and Atypical ME-ICC (as defined in Carruthers et al. 2011). I think the list should also be able to differentiate Fukuda for research comparison purposes. These checklists could be entered into the database. Then we could know exactly what researchers are researching. And I think the CAA should set a target date at which they will begin refusing samples from newly diagnosed patients that don't come with a checklist and don't meet ME-ICC (including atypical).

    If ME-ICC is the gold standard, it needs to be treated as such.
    Ember and Snow Leopard like this.
  5. Ernie

    Ernie Senior Member

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    And a big thank you to Dr. Judy Mikovits for getting our illness the recognision it should have been getting years ago!
    RL_sparky likes this.
  6. Cort

    Cort Phoenix Rising Founder

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    I was speaking too broadly when I stated that all the new studies will require people to have met the CCC and Fukuda criteria. I went back and I looked and I found that I got that statement from the description of the Cook study. The other studies don't state what criteria they're using. That study is not using the Biobank.

    I do agree with Jennie that once you add the PEM and cognitive issues as a requirement then you've met the parts of the CCC criteria that make the most difference and she brings up a good point about the logistics of requiring a CCC diagnosis...
  7. Astrocyte

    Astrocyte

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    Dr Vernon sounds dynamic.
    And I look forward to the eventual results of 'Knowledgebase meets Broderick's systems biology'.
  8. barbc56

    barbc56 Senior Member

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    Yea, for Dr. Vernon and the CAA!!

    Barb C. :>)
  9. Ember

    Ember Senior Member

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    This seems an incredibly feeble rationale for not using the Canadian Consensus Criteria in research. Here's how Dr. Peterson advises physicians making an ME/CFS diagnosis:

    This week Dr. Vernon is criticizing Hemispherx Biopharma for its outmoded cohort selection: There are hints of promise for Ampligen especially in the anecdotal treatment success stories but those are difficult touncover in data where all participants are lumped together (http://www.research1st.com/2012/03/...&utm_campaign=Feed: Research1st (Research1st)). We know CFS is heterogeneous, she writes, adding that the company has an ethical responsibility to patients and its investors to dig as deep as possible and to conduct more sophisticated subgroup analyses as part of its next submission to the FDA.

    If Hemispherx Biopharma is guilty of using crude measures...that in hindsight arent likely to discriminate...very well, then what of the CAA BioBank's ethical responsibility to us when it comes to patient selection?
  10. Andrew

    Andrew Senior Member

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    I'm getting a sinking feeling that CAA has not really changed. All they have done is rebranded, but the quality has not improved. It still looks like it's still more about making a big splash, and less about quality and professionalism.

    Here's what I suggest. Because the CAA has always been good at self-promotion, maybe they should limit themselves to raising money and giving grants to others. IOW, don't run a blood bank or do any actual hands-on work. That way McCleary can keep her job, the other resources will be put to good use, and we won't have to suffer their low quality work anymore.
    Ember likes this.

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