Why ME patients cannot trust the CDC's response to their disease

oerganix said...:

I hope the WSJ and NYT journalists are still reading your blog, PA. Apparently they don't know the history of the CDC, politically or scientifically or they'd have a better understanding of why ME patients and their caregivers cannot trust the CDC or the NIH or the US government's response to the disease.

Before writing any more of this "balanced" coverage, they should spend a weekend reading Osler's Web by Hillary Johnson - all of it.

The Congressional hearings 20 years ago found Congressionally mandated money for research into "CFS" was diverted (stolen), the CDC lied to Congress at first, then substituted Bill Reeves as "leadership". He then changed tactics from the diversion of funds to the diversion of attention away from the biomedical facts, essentially morphing the disease into a modern version of female hysteria and/or depression.

This PrimeTime Live video shows that much was known back in 1996 but never followed up by the CDC/NIH and nothing much has improved since then:

http://www.youtube.com/watch?v=AW0x9_Q8qbo&feature=related

Any virologist, biologist or clinician could have seen that the disease was causing distinct neuropathy back in the mid-80's. Peterson and Cheney did the brain scans that showed damage similar to that seen in HIV/AIDS and Alzheimer's.

But to this day, the CDC, following the practices of the disability insurance industry, declares that all tests, biomarkers and treatments for ME/CFS are "experimental" and thus patients can't even get those tests or treatments unless they can pay for them themselves. Yet CDC never does the follow up research to bring those tests, biomarkers, Ampligen, etc., to the point that they can be accessed by patients impoverished and disabled by the disease. To this day, disability insurance companies use the CDC's statements to justify denying claims for lack of "objective" evidence. Like the CDC, they also disdain clinicians who diagnose the disease by listening to the symptoms and, like the CDC, they put more weight on the opinions of those who would rather look at charts and files than actually consult with patients.

ME/CFS was no more a 'mystery' back in the mid-80's than was HIV/AIDS, yet billions of dollars have, and continue to be, dedicated to that retroviral research.

This was obviously not a scientific decision, but rather a political one. Thus all the handwringing about how science takes time and how the patients are diverting precious resources by behaving politically instead of like good little lab rats is just another attempt to blame the disease and the lack of progress on the patients - again.