ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Criticism of the CDC's CFS research
Saturday 5 September 2009
When it comes to its research into chronic fatigue syndrome (CFS or ME/CFS), the CDC takes a lot of heat. I have to say, in my opinion much of it is warranted -- endless studies on a history of abuse, woefully inadequate funding, and inclusion criteria that appear to leave the door open for people with primary psychiatric disorders have badly eroded the agency's credibility.
A recently published study really boggles the mind. The CDC did a population-based survey in Georgia to look at self-medication in people with ME/CFS as compared to healthy people. Hmm. Just by looking at the main symptoms, most of us could probably guess -- meds for flu symptoms, joint and muscle pain, sleep, digestive issues and allergies? Plus maybe some prescribed antidepressants? Bingo!
So what was the CDC's conclusion? That researchers need to explore whether these medications are safe when taken in combination? That we need treatments that take into account the myriad symptoms of the condition? That we need more research to find the underlying cause of such varied symptoms? Nope.
The conclusion is this:
"Researchers and medical care providers of patients with chronic fatigue syndrome should be aware of polypharmacy as a problem in such patients, and the related potential iatrogenic effects and drug interactions."
That's right. Doctors should know about the "problem" of their patients taking multiple medications. The conclusion that this is a "problem" is based on the finding that people with ME/CFS take 2 more daily pills (including supplements) than healthy people. Only 2 more? Sounds to me like healthy people are taking an awful lot of pills, if they can nearly match the number taken by someone with several dozen debilitating symptoms!
I saw a wonderful rant about this in a newsletter and asked the ranter if I could share it (thanks, Jean!):
"Oh my! There might be something wrong with people with CFS! What a concept! Maybe there are sleep problems accounting for the sedatives!!; perhaps they are prescribed anti-depressants!! Could it be that there is actually something wrong with people with CFS??? . . .
What this groundbreaking piece of research from our government funded agency shows better perhaps than any other is that lack of accountability to anyone but the government has produced a disgraceful waste of the tax payers money. No wonder we have got nothing from the CDC in any way helpful to people with CFS since 1985. . . . That this bit of triviality, not even worthy of a high-school science fair project, is to be published, is astounding, and shows the nearly unbelievable institutional bias against patients with CFS. We need our private researchers. At least if they mess up they don't get funded."
Perhaps the next time CDC researchers interview ME/CFS patients, they should ask for suggestions of how to more properly focus their attention and spend government funds so that their research might actually help someone.
The full article can be found here. The article also includes comments from others.
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