An intense battery of medical and psychological tests of people with chronic fatigue syndrome has strengthened the idea that the mysterious ailment is actually a collection of five or more conditions with varying genetic and environmental causes, scientists reported yesterday.
In the movie I Remember Me, the immunologist Nancy Klimas talks about how researching CFIDS/ME is like putting together a puzzle in which you don't know how many pieces are involved and you don't have the picture to tell you what the finished puzzle looks like. But actually, it's most likely five or six different puzzles with all the same subsequent information lacking.
I do wonder though about the conclusion that "the brains and immune systems of affected people do not respond normally to physical and psychological stresses." Like I said, I haven't read through the study, but, well, how would they know that when people who are suffering from a debilitating illness and are therefore living with a higher level of stress than healthy controls are not responding normally to stress? Cancer patients undergoing chemotherapy or those with congestive heart failure -- illnesses with a similar level of debility -- were not studied along with those in the Witchita study.
Needless to say other media sources treated the story absolutely abysmally, including trotting out the tired old "chronic fatigue syndrome may actually be real" blah blah blah.
Yahoo! News begins with "Chronic fatigue syndrome appears to result from something in people's genetic makeup that reduces their ability to deal with physical and psychological stress" (yeah I wouldn't at all be adept at dealing with stress while being an academic, losing my career, going through the two-year-long Social Security gauntlet, and living with chronic pain) then moves on to my all-time most annoying comment whenever there is a story about a CFIDS/ME research breakthrough: "the research is being called some of the first credible scientific evidence..."
The Los Angeles Times starts off with "Chronic fatigue syndrome, often dismissed as the imaginings of depressed and whiny people, is caused by genetic mutations that impair the central nervous system's ability to adapt to stressful situations..." Oh so good to know I'm not just a whiny person imagining all this pain and weakness. They also have a quote from the director of the CDC, Julia Gerberding, stating that "this is the first credible evidence for a biological basis." Because, you know, the 3000 scientific papers that have been published about CFIDS/ME over the last twenty years have given us nothing apparently.
After several more digs at us being possible slackers and hysterical women, we get "diagnosis is difficult because many of the psychological symptoms, in mild form, are common traits of a modern stressful life."
Psychological symptoms?? There are no psychological symptoms listed in the Fukuda et. al. diagnosis.
Sigh.
At any rate, there's a whole lot of stuff to keep researchers busy for awhile. Though five years from now reporters will still be saying that any new finding is finally proof that CFIDS/ME isn't all in our heads.
6 comments:
Ya, what a crock. Apparently all the far superior work being done outside the US doesn't count with the CDC. As always, they try to pin it on psychology ("stress"). Can't wait until they suggest antidepressants as a treatment. What is amazing is that there is absolutely no mention (at least in media reports) of viral triggers. Argh!
Apparently all the far superior work being done outside the US doesn't count with the CDC.
Yeah and much of that comes from American researchers publishing in European journals.
Can't wait until they suggest antidepressants as a treatment.
One of the members of a yahoo group I read (and sometimes post to) pointed out that Simon Wessley and his school will probably try to use this to say that we all have a genetic predisposition to hypochondria. Grrrrrr...
What is amazing is that there is absolutely no mention (at least in media reports) of viral triggers.
Exactly! That's what we were all saying as well. Now, there were some good people involved in this study, like Nancy Klimas and Leonard Jason so there might be some good research that does comes out of this. But the fact that they can't fathom that there might be more going on than just "stress" means that the CDC is really never going to get a grip on this thing -- or things.
I came across this last night that seems to be some of the initial findings of this study three years ago. Very very interesting...
Oh my. I hadn't heard about the Huntington's connection, although there have certainly been indications that it's something neurological (perhaps triggered by a virus, since we also show significant differences in immune gene expression). Could it be we have Acquired Huntington's-Lite? In a way I hope not because it sounds untreatable! :S
Oh my. I hadn't heard about the Huntington's connection, although there have certainly been indications that it's something neurological
I hadn't either until I came across that by accident. One of the things the Lyme people keep pointing out is that it causes serious neurological problems when left untreated. I don't think all of us, or even most of us, have Lyme Disease. But I do think we have some sort of viral and/or bacterial infection(s) that are causing neurological damage -- i.e. your Aquired-Huntington's Lite.
Michelle -
You did a wonderful job of summarizing my reaction to the CDC press release also. I've been meaning to write the same sort of blog all week but was too busy. My feeling is that this is what happens when scientific information is "dumbed down" for the general public. The abnormal response to stress has been well-documented in studies of immune system and endocrine dysfunction in CFIDS (neither of which was mentioned in the CDC's press release). The CDC wrote an over-simplified press release; then the newspapers and the AP further simplified it until any real information was completely watered down and misleading.
I am also horribly frustrated by the CDC's "not-invented-here" attitude of ignoring anything they themselves haven't come up with. We've seen it for years with the name and criteria, and now they're professing to have the first evidence of a genetic basis for the illness. What about all that exciting research that came out of England and Scotland last year?
They're playing political games with my health and my children's health.
Thanks for expressing my feelings so aptly!
Sue
I am also horribly frustrated by the CDC's "not-invented-here" attitude of ignoring anything they themselves haven't come up with.
OMG, exactly! I mean, their stupidity would simply be something to laugh at if it wasn't for the fact that, as you say, in their stupidity they are playing politics with our health.
And then having a bunch of morons in the media just makes you want to rip your hair out. Or their's. I vote for their's. ;)
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