Recently the Journal of Disability Policy Studies published new information about the number of Chronic Fatigue Syndrome (CFS) sufferers. A Constructive Debate With the CDC on the Empirical Case Definition of Chronic Fatigue Syndrome.
In essence, the number of people considered to suffer with the illness has gone up by a multiplying factor of 12.7. That means that now the new United States patient population for CFS is a whopping 4 million!
I suggest that we don’t become too alarmed yet, because some of this difference could be due to the interpretation of the case definition used by the CDC: what is CFS, what symptoms does someone have to have to be classed as having Chronic Fatigue Syndrome, and all of the rest of the criteria for Chronic Fatigue Syndrome, that is required to meet a literal diagnosis. That’s because… .
The authors’ research group proposes that selection criteria for CFS cases have broadened and provides data indicating 38% of those with a Major Depressive Disorder were misclassified as having CFS under the new CDC empirical case definition.
Given the importance of standardizing procedures for identifying CFS, more research is needed using different criteria on samples of patients with CFS and other illnesses. The erroneous inclusion of people with primary psychiatric conditions in CFS samples has detrimental consequences for interpreting epidemiologic and etiological findings.
Unfortunately, this problem could be adding to our overall dilemma of not coming up with good, quantifiable answers. If (the collective) we are are not all working from the same starting point (e.g. the same diagnostic criteria for Chronic Fatigue Syndrome), we should place no faith in the results. The results mean nothing!
The new numbers for the CFS patient population may not be accurate at all. That’s why it’s important not to read too much into them… yet.
All comments and thoughts welcomed,
Cinda Crawford, host of the Health Matters Show
PS- You also can check this 2005 reference from Canada. Large numbers of people with Chronic Fatigue Syndrome are not only found in the United States, but also Canada. This report includes figures for the illnesses, Fibromyalgia and MCS, Multiple Chemical Sensitivity.
{ 4 comments… read them below or add one }
sharon 02.23.10 at 7:00 am
The CDC/CFS had 30 years to come up with real hard-core numbers but did NOT do so for fear that the public would see a true epidemic. I do believe the true numbers of CFIDS sick, not just tired but sick, are much higher than what the CDC says. People are NOT getting the medical care they need nor the correct diagnosis. And we can blame the CDC/CFS shop and William Reeves for all the damage done to the CFIDS sick.
NEVER believe anything that comes out of the CDC. Nothing. They fake “epidemics” like Swine Flu but ignore the real ones like CFIDS. Follow the money trail – and make sure to see what the Insurance companies DO NOT want to pay for – CFIDS.
Cinda Crawford 02.23.10 at 11:02 am
amen…Amen…AMEN! Whether we want to believe it or not, the medical industry is one of big dollars and too often, little “sense.” We are the consumers; we are the ones sick. We only really matter when and if the powers-that-be have an answer that they can make big bucks off of! (Did I say H1N1? No, but I implied it!) So far CFS people are a nuisance, even though our numbers are large. I wouldn’t be surprised at all if the patient population isn’t growing, but including so many people inside the label of CFS does no good if they aren’t characterized well. Study results become useless. No one benefits if someone simply waters down the conclusions because they didn’t construct the study properly. That’s very likely to be the case with the attempts in the UK to study XMRV, another case in point. Unless you start with given, certifiable facts (diagnosis criteria), you’re comparing apples to oranges. I’m blogging about that more today. Would love to have your further input
Thanks, Cinda
Tom K 02.23.10 at 4:52 pm
Hi Cinda, thanks for covering this. Some people may consider the definition issue a bit esoteric but really when the figures go up by a factor of 12.7, one needs to ask some tough questions.
I felt so strongly on the issue that I set up a petition to complain about the new CDC definition/criteria – anyone should be able to get it by clicking on my name.
Cinda Crawford 02.23.10 at 5:29 pm
Hi Tom, I went and signed your petition. This is important work. I’d appreciate you putting a link to the original post on the page. Thanks, Cinda Crawford