AIDS and ME/CFS: stories with two different outcomes

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.

 AIDS

 ME/CFS

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.
* The CDC is a U.S. government agency that focuses on public health. The letters CDC stand for Centers for Disease Control and Prevention.
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4 Responses to AIDS and ME/CFS: stories with two different outcomes

  1. Fatima says:

    I agree with you completely, Julie. It doesn’t make sense and, as Dr. Racaniello states at the end of his article, it’s a complex disease “But that never stopped a good scientist”.

  2. Julia says:

    Very interesting summary. I did not know that Chronic Fatigue Syndrome was first reported in 1934. Shouldn’t the mere fact that it’s such a complex disease indicate that more money should be spent on researching it???? Thanks to Dr. Racaniello for explaining many of the important issues in this debacle.

  3. GKGK says:

    I think your item 5 misses an important point: that the cause of ME/CFS may have nothing at all to do with a virus of any kind, in any way. I think Dr. R made this mistake in an even worse way by titling his piece “A Tail of Two Viruses”: It’s not. It is a tale of one virus and one unknown.

    Comparing AIDS to ME/CFS only makes sense if they are (in fact) both viral diseases, and we don’t know that they are. The fact that people have been looking for a viral cause for decades, and not found it makes it less likely to be true. For AIDS, it only took a few years to find the virus; two, if I remember correctly. Although there might have been some arguments for another year or two after that. Even counting that, and counting the start of the ME/CFS hunt as Incline Village, you are still comparing 4 years and success to 20+ years and nothing.

    GKGK

    • Fatima says:

      Very valid point GKGK; however, for many of us with ME/CFS the onset of this illness most certainly resembled a virus, i.e. usually accompanied by flu-like symptoms. Many researchers believe one of the major causes of ME/CFS is viral. For example, in his Valvyte studies, Dr. Montoya only wanted people who had an overt viral illness onset. On the other hand, Dr. DeMeirleir who developed a test to determine the types of CFS, believes there are many different pathogens and even diseases that trigger CFS. The 7 or 8 different subtypes now used to classify a patient with ME/CFS portray the complexity of ME/CFS. Some people may have been exposed to bacteria, toxic chemicals, etc. Other people may have developed ME/CFS as a result of an emotional event such as depression or periods of stress. Some experts also theorize that such events, alone or in combination, may interact with certain neurological or genetic abnormalities to trigger CFS.
      There most certainly are other non-viral pathogens involved in this illness, but Dr. Racaniello studies viruses and was making a valid comparison of two illnesses’ outcomes from a virologist’s perspective. Thanks for your interesting comment.

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