Sunday, August 8, 2010

What do we have if we do not have CFS?

"Dr. Peterson and others had found tests that distinguished the cluster-outbreak patients from those with simple "chronic fatigue" – low natural killer cell function; the 37kDa Rnase-L defect; SPECT scan abnormalities; extremely low VO2 Max stress test scores; viruses such as EBV, HHV-6, and cytomegalovirus. Other researchers have found mycoplasma infections, mitochondrial dysfunction, abnormal immune cell ratios, NMH/POTS; myocarditis."
"denying patients access to this testing also results in denying them access to treatment that has been found successful for patients who have such biomarkers or pathogens.

CDC's emphasis on one test-one result also denies the reality that most patients with "CFS" (according to the original definitions) have more than one thing wrong with them. But there is no way to tell that from the CDC website (See"
"While these tests might not be useful in "diagnosing" a single entity called "CFS", they are very useful in understanding and treating CFS."
"the pattern of biomarkers and viruses - not a single test – is critical for understanding various subgroups that could now be defined empirically, if CDC permitted it. And by listing everything as if each was a single test, and each test represented a different disease, CDC effectively misleads anyone who comes to their website seeking an understanding of "CFS."
"We have reached a point where CDC explicitly defines CFS to exclude the very patients they were charged with helping."
"British psychiatrists used a definition that omitted the sickest patients, excluded anyone with a physically diagnosable condition, and included patients with depression and anxiety disorders. Nothing could be further from the Fukuda definition – yet even today, because they say it is "CFS," the media and many medical experts assume it is the same thing."
"will the medical community come to its senses and realize that the real disease is in the patterns? Will they finally understand that the subsets of this disease were diagnosable with biomedical markers a long time ago?"

No comments: