Article: CFIDS Association Commits to Open Science Movement, Seeks to Bolster CFS Research Field

Article: CFIDS Association Commits to Open Science Movement, Seeks to Bolster C

You can view the page at http://forums.phoenixrising.me/content.php?541-CFIDS-Association-Commits-to-Open-Science-Movement-Seeks-to-Bolster-CFS-Research-Field

 

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).

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).

 

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.

 

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)

. . . .

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.

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.

 

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.

 

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

 

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...

 

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).

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

 

Yea, for Dr. Vernon and the CAA!!

Barb C. :>)

 

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.

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:

So the most widely accepted definition is the Canadian Consensus, established in 2003. This is used in most clinical trials now. It's used as entrance criteria into the upcoming Columbia studies with Ian Lipkin. It's used in a number of drug trials, etc. So I encourage if there are physicians who aren't using this definition, they should be. This has now been automated, so that there's a downloadable program, so you can simply tick through the questions and find out if the patient meets the CDC criteria or the Canadian Consensus Criteria or both. And that's very helpful for physicians because it was cumbersome to figure out whether or not they met the criteria. And that has an iPad application even, so it's really helpful (http://vimeo.com/30430680: 16:20-17:15).

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?

 

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?

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.