Today, I came across an interesting article, dated January 12th, 2012, written by Vincent Racaniello, at the time Professor of Microbiology and Immunology at Columbia University. In preface, I have always wondered why the AIDS epidemic drew such huge attention in the public, media, scientific and governmental areas, and ME/CFS was pushed under the rug, so to speak.
Of course, I can’t dismiss the fact that the AIDS epidemic caught the attention of the show business community, since it was in this venue that the infection became a highlighted problem. Big names in Hollywood and other celebrities, took up the cause to raise funds for research in the 1980s, and the government was caught up in the hurricane-like fanfare.
Acknowledging that the HIV infection was extremely contagious to others, and that, in the beginning of the outbreak in the US, almost half of the patients died rather quickly; patients with Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome (a misnomer and huge insult to patients) are not contagious to other people. IMHO, ME sufferers are contagious to their own bodies; bodies that are losing the raging battle within.
But, I digress. The article, part of which is quoted below, states very clearly, the differences between AIDS and ME/CFS as diseases, and how the scientific community and the US government departments (mostly the CDC in the beginning) did not take the seriousness of ME/CFS to heart. At the same time as the outbreak of AIDS in the 1980s, the CDC diagnosed ME/CFS as a psychological illness, dubbed it “CFS,” and diverted research funds to other areas. Until then, it was correctly called ME – Myalgic Encephalomyelitis, by the World Health Organization (WHO).
Here is the quote:
In contrast to their excellent work on AIDS, the CDC has stumbled when tackling CFS. The CDC has dismissed evidence that CFS 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 CFS to other programs. These and other missteps alienated the CFS patient community—the opposite of what the agency accomplished with the AIDS community.In part due to the standardized case definition of AIDS, identification of a candidate virus was relatively rapid. Determining its role in the disease was facilitated by the development of a blood test, which could be used to prove that HIV-1 caused AIDS. 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.Why have investigators failed to identify a virus behind CFS? (It is not due to the lack of appropriate technology; this has improved substantially since the 1980s with the development of polymerase chain reaction and rapid DNA sequencing.) One explanation for this dilemma is that an infectious agent does not cause CFS. However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. Additionally, CFS is a heterogeneous disease, and 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 CFS symptoms. This scenario implies that at least some 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 CFS symptoms become apparent.In retrospect, it is clear that the properties of AIDS made it an easy disease to understand. While the path to understanding CFS has been clouded by non-scientific issues, in the end the main reason why we do not understand this disease is because it is extraordinarily complex. But that never stopped a good scientist.