Frequently Asked Questions by ME/CFS patients
- Am I contagious?
Not usually. During acute enterovirus infection, viruses can be transmitted through respiratory secretions or contact with fecal materials (mother cleaning up a child's diaper). The virus shedding in the secretions and feces decrease quickly after acute infection, although can remain in the feces for weeks to months. Viruses in the bodily fluid should decrease to none or minimal amounts by the time a patient is classified as ME/CFS (6 months of illness). The viruses are mostly hiding in the tissues (stomach, brain, heart, muscles), but extremely low levels of viruses can be detected in the blood of ME/CFS patients. In general, family members or significant others would not come down with the same illness unless there was a common exposure to sick people or contaminated water or food. Knowing 30% of the patients can have detectable viruses in the blood, it is probably not safe to donate blood.
- How do I get these viruses?
These infections are usually acquired by inhaling infected respiratory secretions or ingesting contaminated water and food. Epidemics of these infections occur around the summer and fall of each year within our geographical region and many other areas of the U.S. Ingestion of contaminated water and food while traveling is a common story reported by the patient.
- How do these enteroviruses survive in me for so long?
Common cold viruses, influenza viruses, noroviruses (one of the causes of cruise ship epidemics) are examples of viruses that do not survive our immune response. Herpes viruses, including Herpes virus 1 and 2, chickenpox, Epstein-Barr and CMV, HHV-6 are known to survive in our body despite a good immune response. Hepatitis B and C infections commonly cause chronic infections, but the inadequate immune response may also be partially responsible. HIV, on the other hand, causes life-long infections. Enteroviruses are thought to cause self-limited, acute infections, but our studies, as well as others, have clearly shown that persistent infections can occur. Although the reasons explaining how these viruses can survive in our body are still being worked out, it is known that they do not kill their host cells. Our own cells actually protect them from the attack of immune response. From the very start of the virus infection, the immune system failed to kill off the infected cells. Afterwards, the immune system's efforts are futile in destroying the viruses, and unintentionally continuing the flu-like symptoms. Periodically, the virus load in the cells will decrease as the result of immune response, the patient would feel better for a day or so since the immune response would subside. Afterwards, the viruses grow back, and then the immune system would react again. Since many infections behave this way, antiviral treatment or immune booster will have to be taken for years.
- I got sick after eating shell fish but my significant other did not get sick after eating the food:
Everyone's immune system is different. The infection can be stopped in an early stage if the immune system is strong. If a patient has had prior enterovirus infections or a weak immune system, then more severe infections can occur, which would continue on if the immune response is still inappropriate. Although uncommon, we have seen 2-3 family members became ill after eating shellfish while traveling.
- What is Th1 or Th 2 response?
Th1 and Th2 are acronyms for T-helper cell 1 and T-helper cell 2 responses. These two responses can be imagined like the two ends of a see-saw. At rest, the two responses are neutral symbolized by a horizontal see-saw. In order to fight virus infections, the immune system shifts up the Th1-side. When the viral infection is gone, the see-saw will return to a neutral position. If the virus infection is fought with the Th2 response, the Th1-side is shifted downwards, the viruses would survive the immune attack, and persist in the body. Vigorous exercise, severe stress, steroids treatment, the second half of the menstrual period and prior asthmatic episodes with respiratory infection can all shift the immune response to Th2 direction.
- Why am I worse before my menstrual periods?
Two weeks before the bleeding phase of the menstrual period, the immune response shifts toward the Th2 side. In a healthy female, this would not cause any problems. However, a chronic viral infection would get worse when the immune system is shifted toward the wrong side.
- I had gastrointestinal symptoms after I have prolonged respiratory infection and was told to have IBS (irritable bowel syndrome) and bacterial overgrowth. Are these related?
The viruses in respiratory secretions are swallowed into the stomach, and then travel down the intestinal tract where more infections will occur. We have shown the presence of viruses in the stomach, small bowel and colon of ME/CFS patients. The symptoms of IBS (upper and lower GI tract) occur when the immune system react to the viruses growing in the intestinal cells. When the quantity of virus decreases in the cells, the patient would feel better. We have demonstrated the virus protein in the muscle layers of the small intestines and colon, which may be responsible for the motility problem and explain your gastrointestinal symptoms. Bacterial overgrowth is secondary to the above process, and is not likely the root of the problem.
- Why is it a viral infection if I did not have the �flu� right before I had the onset of debilitating fatigue?
We have seen numerous patients who had the usual respiratory or gastrointestinal infection more than 6-12 months before the onset of debilitating fatigue. Symptoms include nausea, bloating, diarrhea, mild respiratory complaints, and etc. Sometimes, even after the acute infection resolves, these symptoms continue at low levels or disappear resulting in less clues to trace back to the acute infection. Other times, patients already had an episode of the same symptoms years ago. When the immune system is imbalanced, the viral infection recurs again causing severe symptoms.
- Why do my sinus infections or sore throat come back every few weeks? No antibiotics can cure it.
Enterovirus can cause nasal and sinus infections. If the viruses are not killed by the immune system, they will grow back similar to "garden weeds." The immune system attempts to mount another attack, leading to inflammation similar to bacterial infection of the sinuses. In recurrent viral sinus infections, antibiotics will not work and should not be taken. We have shown viral protein in the sinus tissues in 50% of the specimens removed at the time of sinus surgery for recurrent sinus infection.
- Should I get a flu shot?
There is no formal recommendation for ME/CFS patients. About two-thirds of my patients received a flu shot without any problems, but one-third experienced a relapse of their symptoms. The relapse can be mild in most cases, but severe in others. It is better to take the flu shot when there is a serious epidemic because the flu is more severe and potentially lethal compared to the mild relapse of symptoms triggered by a flu shot. If you decide to get a flu shot, try getting it when you feel good rather than on those bad days. Any vaccination can shift the immune response to the Th2 side, which can lead to relapse.
- Why my brain fog is so severe at times but better in other times?
Brain symptoms - brain fog, inability to concentrate, dizziness, headache - are probably the result of immune response against virus-infected cells in the brain. These viruses are known to spread to many regions of the brain, and have been detected in brain tissues. We often take for granted how our normal brains function, but symptoms will develop when the brain is affected by these viruses. Similar to the symptoms arising from other organs, the brain symptoms will improve when the virus infection is reduced by the immune response.
- I had frequent infections as a child, could this be related to what I have now?
Frequent infections during childhood may suggest a subtle or significant problem of your immune system. On the other hand, these infections can come back repeatedly, since there are over a hundred enteroviruses, and they may not be killed off by the immune response. Patients often told me that they experienced a respiratory infection every winter that lasted several weeks. These recurrences may not be the result of a new infection, but actually the relapses of the same infections when the immune response is shifted to Th2 direction. Sometimes the Th2 shift can be triggered by indoor allergens or molds.
- I have high mercury levels in my blood and urine as measured in certain laboratories. Should I have all my amalgam removed?
We have a number of patients who had their amalgam removed and some actually followed up by chelation therapy. We have not seen anyone who had a substantial improvement of their symptoms.
- What is the relationship of mold exposure to this illness?
We have a number of patients implicating toxic mold exposure to their illnesses. Even though some of the effects of mold are known, it is rather difficult to examine the role of mold in this illness. Mold can cause serious destructive disease in immunocompromised patients. Mold allergy is common and can shift the immune response to Th2 direction, which predispose the patient for a chronic viral infection. Toxic molds can produce potent toxins, i.e. T 1 toxin, which can make the patient, along with family members, very ill. We think that the mold allergy plays more of a contributing role in ME/CFS, but it is not the true cause of CFS.
- Do I have �EBV� or chronic fatigue syndrome? What is the significance of EBV in this illness?
ME/CFS is diagnosed by the various symptoms that patient present with. EBV is one of the viruses implicated as the cause of the ME/CFS since EBV antibodies are usually high in those patients. Interestingly, most of the AIDS patients we saw in early 1980s had very high levels of antibodies for both EBV and CMV. It was once thought that EBV had mutated and began destroying the T cells. After HIV was found by two different laboratories in France and United States, the EBV theory was no longer considered. However, EBV can cause B cell lymphoma in AIDS patients when the immune system is destroyed by HIV. EBV has been extensively investigated by our researchers and felt not to be a major cause of this illness. Few patients do respond to drugs effective for EBV, which indicate EBV could play a minor role in this illness.
- Why did I get shingles during my initial illness and the problem subsequently recurred?
Shingles is reactivation of the chickenpox virus when the immune system is down. We have observed a number of patients with acute shingles when they had a respiratory or GI infection in the previous week. Not only have we found enteroviruses in their secretions, but when they have, there was a severe decrease of T cells; they returned to normal after about 1-2 months. We have seen more than 10 patients with shingles coming back on a monthly basis in spite of taking antiviral drugs. A number of these patients have extensive enterovirus infection of the stomach and showed the immune response is shifted to the Th2 direction by cytokine gene profile studies.
- My prior CFS doctor told me I had Lyme's disease based on a test done in a laboratory in California but I did not respond to multiple antibiotics. Why did I not respond?
Maybe Lyme's disease is not the right diagnosis. We have seen a number of patients who had borderline positive antibody for Lyme's disease, but actually had significant respiratory and GI symptoms. The diagnosis of chronic enterovirus infection was diagnosed based on stomach biopsy and markedly elevated antibody for enterovirus. One needs to recognize that Lyme's disease is transmitted by a tick bite on the body, not in the throat or in the stomach. The bacteria of Lyme's disease can spread through the blood to infect heart, joints and the brain, but stomach symptoms, sore throat, sinus congestion are not the usual symptoms of well-documented acute or chronic Lyme's disease. These latter symptoms are consistent with chronic enterovirus infection. At the present time, we do not know if these two different infections can co-exist in the body or exist in the body at the same time.
- Are fibromyalgia and CFS related?
We often see patients with debilitating fatigue for months to years, and then the myalgia would start as the fatigue got better. We are able to find the enterovirus in the stomach biopsies of these patients although the patients with chronic fatigue syndrome seem to have more viruses in the stomach than those with fibromyalgia. We think that CFS patients have lot more viruses and very little immune response, while fibromyalgia patients have less viruses and more immune response. In some patients, the fibromyalgia will start weeks to months after a respiratory, GI infection or a flu-like illness. The different manifestations are likely due to the different types of enteroviruses involved and the immune responses of the patients.
- Why have we not done more with enteroviruses in the last 20 years?
28 years have gone by since coining of the term "CFS" and only just over one year ago ME and CFS are combined to ME/CFS. This is a good sign since American investigators objected to the British investigators' pre-occupation with enteroviruses as the cause of ME, and felt these were different diseases. Unfortunately, the direction of research has shifted to brain dysfunction since the mid-1990s, and enteroviruses were not further investigated and largely forgotten except for our work over the past 10 years. Currently, there is no FDA-approved drug for ME/CFS or enteroviruses, and the medical community has not formally accepted enteroviruses as the major causes of this illness.
- After I recovered, why did the systems come back following a simple cold?
We have seen a number of athletes recover from this debilitating illness and gone back to vigorous exercise, but relapsed later after continually pushing themselves beyond the limit. They had to rest for months to years before feeling better again. The viruses in the tissues are controlled when the immune response returned to normal. Other patients would do the same, but only to relapse after another viral infection, which likely shifted the immune response to the Th2 direction, which could no longer suppress the infection. This immune dysfunction is not different from type 1 herpes infection, although having a fever blister has far less consequence than having reactivation of enteroviruses and relapse of ME/CFS. Trying to correct the immune response is one of the ways to control the underlying virus infection.
- How do we treat this illness at this time?
Because enteroviruses have been forgotten for more than 10 years, there are no FDA-approved drugs. One drug, Pleconaril, was used to treat viral meningitis and the common cold, but was get FDA-approval. We have used IVIG (intravenous immunoglobulin) in patients with IgG deficiency to ameliorate the immune response. This therapy costs few thousand dollars/dose, but most insurance companies are not paying for the treatment. The combination of alpha and gamma interferons is effective in this illness, especially the patients with severe myalgia. The treatment costs $5000 a month; the effectiveness is about 40-50% after 3 months of treatment. The side-effects are difficult to tolerate but the severe myalgia may resolve completely in 2-3 weeks. We use certain Chinese herbs to boost and shift the immune response to the right direction, which is quite helpful in some patients.