CFSAC has called for new RFAs and more funding commensurate with the disease burden for the past 10 years and has been refused by HHS.
Just this past June, 2014, CFSAC recommended an RFA and the reply from HHS was NO. .
Many of you are saying that now is an opportune time to ask congress to step in for us in order to put pressure on NIH for more funding because we have the media attention due to the IOM. Even though I do not agree with the IOM criteria and name, I agree that we are having a lot of media attention.
The question is can we take advantage of this media attention of the IOM report and try to promote funding? I, personally can get behind it if it is clear that the research is biomedical using the CCC. My problem is that if by doing so, we are promoting the IOM report, including the criteria and name, I cannot be part of it.
We can get behind this and for example quote Andrew Kogelnick saying " On a per patients basis, ME/CFS is dead last on the NIH roster". We can quote CFSAC recommendations for funding etc.. Do we need to quite the IOM report?
Although I understand your concerns, I just don't think quoting the CFSAC, ME/CFS experts, or anyone else, is going to have a significant impact. It never has before, even recently calls for change were rejected. Whether you agree with the IOM report/definiton/name or not, it has achieved something novel in that it has got a lot of attention, and that's because the IOM are respected and their opinion counts for something. Enough of a something? We'll have to see, gov't could still just ignore them if it wants to.
But I think it would be a huge mistake not to try and leverage the IOM report to get more funding for research. More funding means more studies and likely some or all will use CCC/ICC in isolation or in overlap with the IOM criteria. Even if some studies only used IOM criteria, more study increases the chance of finding a biomarker(s), which might well mean that the criteria issue becomes less important and/or clearer.
As Alex has been saying, we don't really have any direct say in what criteria get used in studies. I think some of the better researchers are aware of the issues though and are likely to take that into account. Personally, I don't see any reason why not to categorise the cohort by all three of CCC/ICC and IOM as the results might show some difference bettween the groups, potentially. And I'd have thought it would be fairly cheap to do this in some studies. But ultimately it's going to be up to researchers, and to some degree government if they provide grants.
For these reasons, I probably wouldn't mention the name or the criterias, because I don't think there would be much value to that, and campaigns work best when they are short and focused. But no matter where you stand on the IOM report/definiton/name, I don't see any other alternative ways forward that have a significant realistic chance of resulting in progress. So if I were running a campaign to get more research funding I would absolutely quote bits of the IOM report as reasons to increase funding.
Take these two example campaigns that both call for more research funding from gov't:
* We want more funding for research. Here's some reasons why. It should use the IOM defintion.
* We want more funding for research. Here's some reasons why. It should use the CCC definition.
I don't think either would be as sucessful as:
* We want more funding for research. Here's some reasons why.