I recently read a very interesting and comprehensive article about why the stories of AIDS and ME/CFS have different outcomes. Articles like this are usually written by someone in the ME/CFS community, someone who is directly or indirectly affected by this illness. This time, though, the author is a well-known professor of Microbiology & Immunology at Columbia University, Vincent Racaniello.
It’s wonderful to see that the mainstream medical/scientific community is finally taking ME/CFS seriously. It’s been a long time coming!
Below, you will find the main points of Dr. Racaniello’s comparison, but you should read his article and share it with others.
You can also take a look at his fascinating virology blog.
|1. The first indications of the disease called AIDS appeared in Los Angeles in the summer of 1981.||1. ME/CFS was first reported in Los Angeles as well, but in 1934.|
|2. The case definition of AIDS was simple—this made it possible to rapidly and accurately identify new cases.||2. It was difficult to reach a consensus on a clinical case definition of ME/CFS; it underwent a number of revisions over the years. It became difficult to compare findings when different research groups used different definitions of the disease.|
|3. AIDS was readily identifiable and easily diagnosed once a blood test for HIV was developed.||3. There is no indicator or diagnostic test that can be used to identify ME/CFS, and since diagnosing it is a long and difficult process, cohorts established by different investigators vary, leading to different findings, confusion, and contention.|
|4. Excellent work has been done on AIDS; the CDC* was very helpful.||4. The CDC* has made a lot of mistakes with respect to ME/CFS. It has dismissed evidence that the illness is an organic disease, and spent funds on investigating psychiatric and trauma-related causes, rather than infectious origins. The agency also diverted funds designated for ME/CFS to other programs.|
|5. Identification of a virus was relatively rapid. The relationship between HIV and AIDS was further confirmed by the development of antiviral drugs that inhibited viral replication and helped alleviate the symptoms of the disease.||5. Investigators have failed to identify a virus behind ME/CFS. One explanation for this is that ME/CFS may be caused by several different agents or a combination of viruses and non-infectious conditions. Another possibility is that an infection initiates an immune response that spirals out of control, leading to ME/CFS symptoms. This scenario implies that at least some ME/CFS patients have underlying deficits in immune regulation. If that’s true, it will be very difficult to identify the virus involved because it will likely have been eliminated from patients’ systems by the time ME/CFS symptoms become apparent.|
|6. The properties of AIDS made it an easy disease to understand.||6. The main reason why we do not understand ME/CFS is because it is extremely complex.|