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CDC's Chronic Fatigue Syndrome research changing course
Monday 10 December 2012
The CDC has announced that it's looking into chronic fatigue syndrome (ME/CFS) subgroups in the hopes of improving treatment options, discovering the underlying physiology, and nailing down a case definition.
If you're familiar with the CDC's history of ME/CFS research, you might take this announcement with a massive grain of salt. You might also be tempted to spit at your computer screen and utter a few choice words. However, this time, things just might be different.
For those unfamiliar with CDC-ME/CFS history, the organization has focused on one psychological and "biopsychosocial" factors while ignoring the physiological. Patients, advocates and ME/CFS researchers have long called for change and believe the CDC has done considerable harm to research efforts by muddying the waters with their approach and with an alternative case definition. Suffice it to say that it's been a long, ugly fight.
So why is this CDC study different? Instead of using its own researchers and its own definition of the illness, CDC is going through seven ME/CFS specialists and their treatment centers. These aren't fly-by-night or biopsychosocial centers, either - they include Nancy Klimas' Center for Neuro-Immune Disorders, Charles Lapp's Hunter-Hopkins Center, and Dan Peterson's practice in Nevada. (Again, for those who aren't familiar with these names, these are some of the top researchers into the physiology of ME/CFS and they've spoken out against the CDC's previous research.)
As for the controversial inclusion criteria, the CDC says anyone diagnosed at one of these seven centers is eligible - meaning they're using the clinical definitions of the doctors who actually know what they're doing.
Why Subgrouping is Important
ME/CFS research, even when done well, is plagued with inconsistency. A treatment appears promising in one study only to be found ineffective in another. Nothing seems to work for a substantial number of people.
Many researchers believe the reason for this is that the term ME/CFS actually covers multiple similar but separate illnesses that each need their own treatment approach. Researching them all in one lump doesn't account for these different subgroups, which means it's all doomed to finding nothing conclusive.
The belief is that, by defining subgroups based on physiological differences, research will start to provide better answers. We could identify treatments more effectively, and we should be able to get a better understanding of what's behind the illness(es.)
I'd like to link you to the CDC's website about the study so you can look over the particulars, but since the agency's site is currently down, here's the information on the ProHealth site: CDC Announces 7-Clinic Study to Characterize ME/CFS and Its Subsets.
Let's hope this is a change of direction for both the CDC and for the millions of people who need answers about their illness.
The above, with comments, originally appeared here.
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