What is the CDC doing about Morgellons?
It has been reported several times that the CDC is forming a "task force" to investigate Morgellons, but I could find no mention of this on the CDC web site, nor did the news stories go into much detail. So I emailed the CDC to see if they could give me the official line on what they are currently doing. I got the following response (dated Thu, 1 June 2006 ):
"CDC is forming a working group to provide scientific overview for an objective review of issues surrounding what we are referring to as Morgellons Syndrome. This multidisciplinary group will develop a strategy by which we would expect to form a scientifically useful case definition, an important step toward answering other critical questions as to cause and possible treatment. We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause. That important question can only be addressed by objective inquiry. / Dan Rutz Communications Specialist, Centers for Disease Control and Prevention(CDC)"
What does this mean? I'll give you my interpretation.
They are "forming" a working group (meaning it's not formed yet), to "review .. issues" (meaning looking at the available purported evidence, and judge its scientific rigour and its public health impacts.)
They are looking at something they are "referring to as Morgellons Syndrome", (meaning they have not judged it a disease, not even a syndrome, they are just picking a name for something that might turn out to be one of them, but is initially just a phenomenon that the media wants investigated).
The "multidisciplinary" group (meaning it has at least two people, including someone for mental health) will " develop a strategy by which we would expect to form a scientifically useful case definition" (meaning they will figure out if Morgellons has enough initial evidence to qualify as an actual syndrome or not, and if so, narrowly define what set of symptoms should indicate "Morgellons" for the purposes of future investigations).
Which would be "an important step toward answering other critical questions as to cause and possible treatment" (meaning, if it is a real disease, you have to have some statistically meaningful evidence of this before moving forward, unlike the current anecdotal or otherwise poor quality "evidence").
"We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause" - (Meaning, people are suffering, so we should do something about it. Possibly they have a real disease, in which case we should track that down. Perhaps Morgellons Syndrome should be treated as a specific type of delusional disorder. Perhaps there are actually several different things going on here. Possibly patients sometimes have some other disease and Morgellons is an unhealthy distraction, in which case we should demonstrate that Morgellons is a fabrication to remove uncertainty in treatment. Either way, it's just good scientific practice to not make any assumptions).
"That important question can only be addressed by objective inquiry" (Meaning - unclear. Did he mean to write: "those important questions", as referenced earlier? Or is he speaking of the "underlying cause"? Or a more general question? Regardless, I'm in agreement, as all important questions should be addressed by objective inquiry.)
The writer, Dan Rutz, is a man I have great respect for. He's the former chief medical correspondent at CNN. He once wrote:
"I left CNN under the pressure of reporting stories "for competitive reasons" even when I knew the information was highly speculative, sensational, and little else. It was difficult to cave in to a management style that favors the sizzle more then the steak and fails to recognize both the positive value of responsible health journalism or the great harm flowing from the opposite."
I feel Mr Rutz must be seeing much of what he describes in the current local TV coverage of Morgellons. It must be frustrating for him to not be able to at least urge restraint. But that's not exactly his current job. His current job is to tell the media what the CDC is doing. He's doing to very good job of that.
After typing the above, I get a Google alert of this story from sfgate.com: which contains this paragraph which make things clearer:
"Not a day passes when I don't talk to somebody who claims to have this," said CDC spokesman Dan Rutz. "In the absence of any objective review, people have jumped to conclusions and found each other on the Internet and formed their own belief structure. We really need to debunk this if there isn't anything to it or identify if there is indeed a new, unrecognized disease that needs attention."
The article itself is much better than others in the media so far . I think perhaps the tide is finally turning.