Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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. Phoenix Rising Team

    Phoenix Rising Team

  2. Merry

    Merry Senior Member

    Columbus, Ohio, USA
    The plans sound well thought out. Encouraging. I hope we are rewarded with significant discoveries within the next few years.

    Thanks for the report, Cort.
  3. Cort

    Cort Phoenix Rising Founder

    I think long-range planning is one of Dr. Vernon's fortes. She's been talking about building this field into one that other researchers will embrace for quite a while and she now feels with the CAA's Biobank and Patient Registry maturing, the CFI's equally rigorous approach to ME/CFS, and the commitment from a bunch of other researchers to organizing and cleaning up the field that things are changing. Dr. Klimas new clinic - using her rigorous approach - plus the commitment of the CDC and other groups to the CASA project - which demands that the community work as a community - are all good signals that some fundamental issues in CFS will be getting taken care of.

    That should mean more interest from outside researchers and fewer 'wasted studies' because of poor design...This approach isn't not sexy but Dr. Vernon believes it will make a big difference. I certainly hope so :cool:
  4. Marg

    Marg Senior Member

    Wetumpka Alabama
    Thanks Cort for you notch! Yes, we will see, slowly but surely progress is being made.
  5. Cort

    Cort Phoenix Rising Founder

    Thanks Marg - I think the number of new efforts and the technology being used to employ them is encouraging. Its also encouraging that, as Dr. Vernon put it - 'we are all talking' and that includes the CDC - a big change for them.

    If you just look at the physician side - Dr. Bateman, Dr. Klimas and Dr. Peterson are all starting to employ sophisticated electronic data entry systems - and they and others are all busy working with projects with the CFI, the CAA, the CDC, PHANU and other groups. For the first time ever ME/CFS specialists are actually in demand :eek:. That's a good sign in itself.

    I think the next couple of years are going to be interesting as these efforts get rolling and start producing results.
  6. Cort

    Cort Phoenix Rising Founder

    It'll be really intriguing to see what the Knowledgebase project produces in the way of novel biomarkers. Apparently its already producing enough for the CAA to partner with a start up Logosomix (???) to explore ways to use them....That's pretty encouraging :Retro smile:
  7. Nielk


    I have been following, myself carefully at the CAA and I definitely see a positive movement for the things that we have been asking for in the past.
    Cort's article gives a great picture of what has been accomplished so far and their vision fr the future. I know that in the past, there was a lot of criticism directed towards them and probably deserved but, what I see now is so different and just like we criticize when we don't like what we see, I believe positive feedback and support is important when we agree with the positive changes taking place. I think the CAA biobank and patient registry is vital. I think sometimes it's easier to criticize than to give praise. I for one am thankful for what they are doing for us.
    Thank you Cort for the article.
  8. Cort

    Cort Phoenix Rising Founder

    A big thanks Gabby. A lot of people have been disgruntled at the CAA in the past and it is difficult to re-orient oneself when a organization changes but I think they have changed and I think the hiring of Suzanne Vernon and their refocusing on research is a big part of it. This is the kind of work that I think it behooves us to support. I honestly see few glitches - they are focused on using the Canadian Consensus Definition (all their new studies will use it), they are delivering innovative studies and they are trying to build a foundation for success at the highest levels.

    I think when you have things like the CAA and the CFI is doing, when you have investigators like Dr. Klimas (who can win NIH grants and are passionate about collaboration) and Dr. Peterson getting support...when you have researchers like Dr. Montoya leading initiative at Stanford, when Dr. Enlander gets a million dollar grant and enrolls people like Dr Shadt - there's real hope for the future in both findings in studies and for the progress of the CFS research field itself.

    Ultimately the goal will be be to get the NIH really engaged - some good findings from the studies underway will hopefully do that.
    Sing, Merry and Nielk like this.
  9. Anne

    Anne Senior Member

    Thanks for this report and for your commentary, Cort! Invaluable as always.
  10. oceanblue

    oceanblue Guest

    Another really interesting and enjoyable commentary, Cort, thanks. And I liked the focus on the process as opposed to specific studies as I think you're right: this sea-change in approach could really open up the field.

    This I found particularly encouraging:
    Nielk likes this.
  11. Cort

    Cort Phoenix Rising Founder

    Thanks OceanBlue - there seems to be real momentum in the field for this kind of change. Dr. Unger at the CDC is playing a really interesting role here...I was told she's been a leader in the CASA project which we've hardly heard about but which I think must be a big driver. Its a big project - a central database for ME/CFS if I understand it correctly - which has helped compel the research community to work together to standardize. With the CDC doing an analysis of how 7 ME/CFS physicians diagnose patients I imagine that over time we'll have a definition that everyone agrees on.

    I was a bit surprised when the CFI created their own Biobank and Patient seemed like a duplication of efforts but Dr. Vernon thought that was all fine - she liked some of the redundancy in the system - what was really important was that they were all assessing their patients in the same way....

    Dr. Vernon has been talking about kind of 'maturing the field' ever since she became research director of the CAA. Dr. Montoya said the same thing at the Ottawa conference. Now it appears that a bunch of other figures are actively working on it....we'll see what happens and what effect it has but if Dr. Vernon is right we should see more research and more effective research efforts over the next couple of years. We shall see!
  12. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hearing that makes me feel happy, that change itself will help to bring in a major shift. Thanks for the article Cort.
  13. Enid

    Enid Senior Member

    :victory:Open science - without walls - go Cort - with all the research already in place in many ways good old US of A has just the capacity to see learn and move forward. And you will (as usual). Hope it wakens to not so much a particular medical specialty but grasp of the whole interacting and dysfunctional systems.
  14. Cort

    Cort Phoenix Rising Founder

    Yes - if we can just tap into the mighty US medical establishment more - I think we could make some real progress - no overnight answers of course - but hopefully steady progress to build on what we have. :)
  15. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Some of these grants look like very good ideas to this non-science person, especially the drug search project. I do really wish that CAA would go that extra necessary (imo) step and use CCC and ICC in their Biobank. It is such a simple step and would momentously improve the science. CAA does include PER/PEM/PENE as a mandatory criterion, to their credit. But one has to wonder why they are so invested in Fukuda and other CDC nonsense.
    silicon and Ember like this.
  16. Cort

    Cort Phoenix Rising Founder

    I honestly don't think they're more invested in Fukuda than anyone; its the prevailing standard so I think they probably feel compelled to have it in there. I imagine everybody will be moving more and more to the CCC and at some point to a new definition. (Lenny Jason is combing their patient registry data to inform a new definition.). I honestly think that while the CAA has not moved to the CCC completely they've been about as forward with that as any other research foundation ...I wonder what the CFI and WPI's stance on this is (????)

    I really like the Drug Discovery project; its the kind of data mining project the CAA loves to fund. I particularly like that it should only take about a year....:)
  17. Astrocyte


    Thanks for posting this Cort.

    Collaborative participation and a social experiment to find a cancer cure. Wow!

    Great video. Inspiring ideas. An open-source and crowd-sourced project funded by the public. I wonder if this is beyond us?

    "Its less the science than the strategy," says the TED guy. Yes indeed, though we'd like good science too.

    Maybe we could get a thread going on 'What's your ideal study?' as a place to start a crowd-sourced research proposal/study? (I haven't worked out how to start a thread yet).
  18. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    I fully understand CAA using Fukuda, what I meant and didn't express explicitly enough is they are committed to NOT using CCC and ICC in their BioBank. All CCC and ICC patients meet Fukuda (as I understand it), so it's not an issue of not using Fukuda, but of following WPI's lead of using CCC and Fukuda. As I understand it CFI's cohorts will meet all three: ICC, CCC and Fukuda. CAA should require ICC and CCC for it's Biobank and all funded studies. The added cost is insignificant compared with the tremendous benefits to the science and patients.
    silicon and Ember like this.
  19. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Could someone from the CAA tell us what their policy is and which definition(s) of CFS they are using? Or could someone point me to the spot on their website that explains this.
  20. Cort

    Cort Phoenix Rising Founder

    All participants in the CAA's new studies will meet both the Canadian Criteria and Fukuda criteria.

    - Patients were physician diagnosed using the Canadian Consensus criteria and the CDC criteria and after exclusion of other inflammatory and autoimmune diseases.

    CFI - no word on their website as to criteria but they are, I believe, getting all their patients from ME/CFS physicians such as Dr. Klimas and Dr. Peterson - so they are solid. Whatever you want to call them, the most important thing is that the people in the Biobank have CFS and I think we can assume these doctors know what a CFS patient looks like.

    CAA Biobank - A subject will be eligible for general enrollment in the SolveCFS BioBank if they have previously been diagnosed with CFS by a licensed physician using either the Fukuda (1994) research criteria or the Canadian (2003) clinical criteria. (June 2010)

    Plus they must also exhibit post-exertional malaise (relapse) plus cognitive problems which are the two key features of the CCC..PEM is the cardinal feature of the CCC - it's what differentiates it most from the Fukuda definition and patients must have that to be in the Biobank

    I believe that at least in the beginning all the Biobank samples were from patients of ME/CFS experts - I believe Lapp, Bateman, Peterson and Klimas (?) all contributed. I don't know about later.

    If you put the Fukuda criteria plus the requirement of having PEM and cognitive problems plus having ME/CFS experts enrolling patients - you've got a lot of filters to help weed out anyone who does not have ME/CFS.

    That said, why not just require CCC - since they seem to be requiring patients to fulfill the most important parts of it? I don't know. It makes sense to me to just require it.

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