As Nielk suggests, whatever our opinion about the CDC, I'm not sure if it's wise for us to allow this to go unchallenged.
I'm feeling more annoyed about this as the info sinks in.
From a personal point of view, I tend to agree with most of Cort Johnson's comments on Jennie's blog re the importance of the multi-site study, and the positive change of focus at the CDC.
I know that my opinions re the CDC aren't shared universally, but I feel very strongly about CDC's multi-site program.
Anyway, this is the comment that i've posted on Jennie's blog...
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I think this is a healthy discussion to be having within our community. I'm sympathetic to all the points of views expressed, but I absolutely agree with Cort Johnson that we need to look forwards and not backwards, and to assess the research program that the CDC is currently undertaking. And I believe that our community cannot afford to lose the multi-site program.
The multi-site study is huge, and probably the biggest research program ever carried out into ME/CFS anywhere in the world. It's a combination of an epidemiology study, with a large and complex biomedical study, and it has vast potential to inform us about ME/CFS. We've needed this for years, and it's what the CDC should have done 30 years ago. It's not perfect, but it will be a really important study, and something to build on. Is this really the time to be stopping CDC funding, just after they've implemented this?
I think we should give Dr Unger credit for what she has put into place, rather than only criticising what she hasn't yet changed.
The CDC's ME/CFS program has changed dramatically since Dr Beth Unger took over. If we look at their current research program, as Cort has outlined, rather than their promotional material, I find it almost impossible to criticise it. The promotional material is important, and they need to change it.
I believe that Dr Unger will follow her evidence, which is what she has said she will do, but it will take her years (from the start of her program) until she collates her own evidence that she is comfortable to use to make visible changes to the CDC's recommendations to ME/CFS. We can't expect her to change everything within the first couple of years of her tenure, even if we'd like her to. Some of us might find her approach too restrained, and not radical enough, but i'd rather have a good scientist directing a good biomedical and epidemiological research program, thoroughly, than a sloppy scientist who cannot plan or instigate long-term research objectives. I believe that the CDC's ME/CFS research program was reset by Dr Unger, and I think we must give it a chance to come to fruition.
The 2016 fiscal year request from the CDC for ME/CFS is $5.412m, and congress have drawn a line through it, possibly because they consider 'fatigue' to be unimportant, because "only lazy people suffer from fatigue, and it's obviously not a dangerous virus or anything like that". (I imagine that's how the thinking might have gone in congress.)
Apart from anything else, it's frustrating that Congress is singling out our community for this treatment, and i don't believe that we shouldn't be letting them get away with it. In my opinion, we should be indignantly fighting against this as a matter of principal. Do we really want to just sit back and let this happen? Do we want them to pull the plug on the biggest ME/CFS research program ever commissioned, just after it's got started? This is a good chance to lobby congress for a specific outcome that congress members can easily respond to and achieve on our behalf. (And congress-people like to have easy specific outcomes that they can easily achieve so they demonstrate that they are doing something useful.) This is a chance to educate congress about ME/CFS.
Looking at the CDC's two latest ME/CFS research papers, this is exactly the sort of biomedical research that we need and it's not being done anywhere else. It does unfortunately use the empirical definition (The Georgia cohort), but even so, i can't critique the direction of travel. It's exactly the direction of travel that we want, and it's exactly the approach to investigating ME/CFS that we all want:
Prediction of complex human diseases from pathway-focused candidate markers by joint estimation of marker effects: case of chronic fatigue syndrome
Bhattacharjee M, Rajeevan MS, Sillanpää MJ
11 June 2015 [Epub ahead of print]
Hum Genomics 9:8.
http://www.ncbi.nlm.nih.gov/pubmed/26063326
http://www.humgenomics.com/content/9/1/8/abstract
Pathway-focused genetic evaluation of immune and inflammation related genes with chronic fatigue syndrome
Mangalathu S. Rajeevan, , Irina Dimulescu, Janna Murray, Virginia R. Falkenberg, Elizabeth R. Unger
Available online 24 June 2015
Human Immunology
doi:10.1016/j.humimm.2015.06.014
http://www.sciencedirect.com/science/article/pii/S0198885915001809
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