From the November 1, 2006 Lyndonville News:

Question...on people who develop CFIDS as a result of inoculation. I had one flu shot in my life, became terribly ill within 48 hours with what felt like flu. And it was the flu that never went away, eventually dx'd as CFIDS. From my years on online support groups, I know there are many more people who have reported the same occurrence.

Answer: There is no doubt that inoculations can set off the process. These shots are designed to stimulate the immune system in a way that can prevent a future infection with something like a strain of the flu virus. Therefore it is just like getting that particular flu virus strain and thus can set off the process. The vaccine that I have seen causing the greatest problem is the Hepatitis B. Maybe that is a coincidence, but...

Question: Neither genetic susceptibility nor increased psychological stress answer this question (about increased incidence) to my satisfaction. That leads me to believe either there's a new pathogen about—or an old one acting in atypical fashion, or that the toxic overload in the environment has reached a critical mass, damaging either the brain, the immune system or both. I can't think of any other explanations. I'd love to be corrected if I'm wrong.

Answer: Because it has been ignored for so long, we really do not know if there is an increased incidence of this illness. If there is, I like the idea of a two hit process. It would go like this. Hit #1 would be silent, either with an infectious agent, a new agent, or a toxin. By itself it does not do anything but sets the stage for hit #2 which would be the standard infection. Because of the silent first hit, the second hit causes ME/CFS. It would make a good science fiction/horror movie.

From the September 2006 Lyndonville News:

Question: I have several questions that have plagued me for years; I’m hoping that you can provide the answer.

1. I have always been amazed at the similarities between CFS and BSE and Scrapie. I am curious to know if you have ever found a person with CFS among the vegan/vegetarian population?

Answer: I have never systematically looked for lifetime vegans with ME/CFS. You question is really about the possibility that the illness may be a prion disease. To my knowledge no one has looked at this in any detail. I would be interested to hear from any reader who has any information about this. The known prion diseases are neurologic illnesses that are fatal. It may be that there are variations not yet understood that are not fatal.

2. Have you ever found CFS to exist in people or their children who are monogamous and have had only one sexual partner?

Answer: The question is whether ME/CFS can be transmitted sexually. The question cannot be answered because we do not know the specific agent that has initiated ME/CFS in a specific individual. It is likely that some known sexually transmitted illnesses can initiate ME/CFS. (Remember, the illness is more often a post-infectious phenomenon rather than due to a specific infection) However ME/CFS clearly may occur in persons who have never had sexual exposure. One “outbreak” many years ago occurred in a convent.

From the May 1, 2005 Lyndonville News:

Question: Can you tell me if orthostatic intolerance causes breathlessness on standing and is there any mechanism through which diazepam could help this?

Answer: Good question. Orthostatic intolerance certainly causes breathlessness, and this symptom is often mistaken for asthma in patients with ME/CFS. One easy way to tell the difference is that the asthma medicines do not work. The cause of the breathlessness is probably a reduction in blood flow through the heart and lungs, but this may be different for every “type“ of CFS. I have definitely noticed benzodiazepines (Valium® or Xanax®) help this symptom but do not know why. The usual answer is that it reduces the respiratory rate by reducing anxiety, and the reduced respiratory rate improves carbon dioxide balance. But I have my doubts that this is correct. It is related to the observation that patients with ME/CFS cannot hold their breath as long as healthy people. This was first noted by Dr. Paul Cheney, but I have never been happy with the explanations I have heard to attempt to explain it.

From the October 4, 2004 Lyndonville News:

Question: In your last newsletter you wrote about two research studies. One found that 53.3% of CFS patients tested positive for a certain autoantibody...my fear is that this study, as in so many studies that you read about, will be dismissed because it does not provide a marker for CFS. It seems to me that when they find positive results like this, then the thing to do is to find other people with the same positive test and group them together and call that one disease. I have never seen this done. My question is: why?

Answer: Thanks for the question. And it pinpoints the current dilemma that the CFS research community finds itself in. How can we break ME/CFS/FM down into meaningful groupings? Lets take this example: There are fifty persons with fever, cough, and abnormal chest x-ray. There are numerous germs measured in these fifty persons, including viruses, bacteria, and other organisms. In an attempt to determine what to call this illness, many studies have been done, and it turns out that of the fifty, forty were born in New York state. Aside from being somewhat unlucky for them, does this detail have any importance, or help in defining this disease? The answer to this question is that the fifty persons have pneumonia, and the detail that some were born in New York state is irrelevant.

But subgrouping is exactly what we are trying to do with CFS. There are several potential subgroups that come to mind: 1) acute vs gradual onset; 2) severe neurologic symptoms vs milder neuro symptoms; 3) presence of “viral” type symptoms (sore throat and lymph node pain) vs absence of “viral” symptoms; presence of markers such as RNAse-L and so on. The problem is that when we look at specific groups, instead of nice crisp groups, the edges begin to blur.

Take the separation of CFS from fibromyalgia (FM) for example. In the early eighties they were considered two distinct illnesses. FM was seen by the rheumatologists and CFS was seen by the infectious disease specialists. But when the studies started coming in, the Epstein-Barr virus titers did not help to separate them into different groups, nor did the immunology, nor even the symptom pattern as it all crossed the lines. Now it seems that both the pain of FM and the exhaustion of CFS are due to the autonomic nervous system. One of the reasons that the work of Dr. Spence and colleagues is so valuable is that they may have come across a clear physiologic difference between FM and CFS. We will return to this point in later editions of the newsletter.

In the study referred to in the question, it would be wonderful if discrete subtypes of ME/CFS/FM evolved from autoantibody tests. But this will require several studies with different laboratories for confirmation. In the past, this confirmation has not come. Epstein-Barr virus antibodies, for example, may be as irrelevant as being born in New York state. But who knows? Maybe autoantibodies will be the needed break. Time will tell.

Disclaimer Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.