I have been very ill with chronic fatigue syndrome since 2006. This is a very difficult and elusive illness, which is still not really understood by modern medicine. In my case, the fatigue and other symptoms characteristic of the disorder started several months after a severe viral illness in late 2005. But it took five years to get a correct diagnosis; at first, I was told that I had a virus that would go away on its own; then, I was told I was depressed; then, I was diagnosed with a type of inflammatory arthritis (partially on the basis of a blood test which revealed elevated autoimmune antibodies). It was only in 2010 that I was diagnosed with fibromyalgia and dysautonomia related to chronic fatigue syndrome.
As is probably obvious, this illness has made all areas of my life much more difficult. I won't bore you with the details here; the purpose of this post is not to gripe about my own difficulties with the syndrome, but rather to share with you what little useful information I have been able to find (some of which is still not widely known).
To my understanding, the most promising theory of chronic fatigue syndrome is that it is caused by chronic, unresolved infections of one sort or another. Now, there have been several studies widely reported in the media claiming a connection between various viruses and CFS. The findings of these studies have not been confirmed by subsequent research. So why believe that viruses may cause CFS? One possibility that has not been much discussed in the media is that there is not one virus, or even a single class of viruses, but rather a wide variety of viruses of different classes that are behind cases of CFS.
The view that multiple viruses may be at work seems to have received some confirmation from the research of Martin Lerner, MD, Jose Montoya, MD (of Stanford University), and John Chia, MD. Examples of viruses that these physicians and reseachers have claimed to find in CFS patients, and treatment of which they claim reduces CFS symptoms (thus indicating that the virus could be causing the CFS), include human herpes virus 6 (HHV-6), ebstein barr virus (EBV), cytomegalovirus (CMV), and enteroviruses. In addition to a variety of viruses, John Chia has found chronic bacterial infections, including chlamydia pneumoniae, and mold infections in some of his CFS patients (some of Chia's research can be found on the Research page of the EV Med website; the rest can be found by searching PubMed or Google Scholar).
If there are several types of pathogens in play in CFS, then this could explain, at least in part, why the syndrome has confounded researchers. It's impossible to replicate findings which show a link between CFS and any particular pathogen if every sample of CFS patients have arrays of different pathogens causing their symtpoms. In addition, Chia, Montoya, and Lerner claim that the particular viruses behind some CFS cases are hard to detect through conventional blood tests, because the viruses in question, such as enteroviruses, spread from cell to cell, and do not kill the cells that they invade, and thus not many copies of the virus get swept up into the bloodstream, at least in the advanced stages of infection. Chia has developed more sensitive blood tests to detect the presence of entervirus in his CFS patients, but he has also had to use endoscopies to get tissue samples from the stomach, and then stain the samples for viruses in order to detect their presence in some of his patients. (This and other some details of Chia's research are discussed in an interview he did for the website Phoenix Rising.)
Approximately 50% of Chia's CFS patients show evidence of chronic enteroviral infection. To my knowledge, the media has not reported (at least not widely) on a possible connection between enterovirus infection and CFS. Chia has found evidence for 11 different kinds of infection in his CFS patients, including viral, bacterial, and mold infections. In addition, approximately 25% of Chia's CFS patients are infected with no known pathogen, so it is at least possible that there other pathogens out there behind CFS (perhaps including parasites, for example).
Chia has had some success treating his CFS patients with antibiotics and antiviral drugs. Unfortunately, there are currently no effective antiviral drugs for use against chronic enteroviral infection, which makes up his largest class of CFS patients. Chia first tried using interferon-gamma and interferon-delta to treat the chronic enteroviral infections, which was effective, but very costly and had many side effects. He currently uses an herbal supplement called sophora to treat patients with enteroviral infection, which seems to improve symptoms in about 50% of his patients (some of his patients recover completely; others see reduction of symptoms; other see no benefit; more men than women see benefit). Sophora boosts the activity of T1 cells of the immune system, and is used in China to treat hepatitis and cancer. Chia is currently looking for other more effective treatments for chronic enteroviral infection (in a phone consultaion, he mentioned that some of the antiviral drugs currently being developed to treat polio, which is a type of enterovirus, could also be effective in treating the enteroviruses he sees in his CFS patients).
I apologize for the long blog post (there is more I could share, including .pdfs of studies; perhaps in a later post), but this information is worth sharing if you know of anyone with either chronic fatigue syndrome or fibromyalgia (which is a related syndrome). There is a lot of misinformation out there, especially on popular and alternative health websites, and it took me a while to track down any information which genuinely seemed to shed light on the disorder. I hope it proves helpful to someone.