If you have recently been diagnosed with ME/CFS, you are hungry for information. While it is a difficult path to live with ME/CFS you can adapt and live a satisfying, meaningful life.

ME/CFS impacts people across a spectrum of severity. ME/CFS is a relapsing and remitting condition, which means that there may be periods of severe symptom severity interspersed with periods of relative wellness. It is not necessarily a progressive disease. All people who have ME/CFS must have what is called a “cardinal” symptom – which is complete exhaustion after exertion. This is called “post-exertional malaise” or PEM.

ME/CFS emerges following a major stress on the cells of the body – by infection or virus, or toxins, or other triggers. A common trigger in Canada appears to be Epstein Barr Virus (Mononucleosis).  It also appears that ME/CFS has a genetic component for many sufferers.  There are subsets of ME/CFS that are being investigated by researchers.  As there are subsets of ME/CFS, there is no “one-size-fits-all” treatment.

For practical tips, read: 10 Things to Focus on When Newly Diagnosed with ME/CFS

 

2 thoughts on “Getting Started when Newly-Diagnosed with ME/CFS

  1. Byron Hyde. M.D. “The Nightingale Foundation”

    The Lake Tahoe Epidemic
    The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls’ basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.
    Dr. Paul Cheney and Dr. Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called the Centre for Disease Control (CDC) in Atlanta for back up.

    First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
    Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr. Carlos Lopez. At this meeting Dr. Gary Holmes gave out his new paper, “A cluster of patients with a chronic mononucleosis-like syndrome,” that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
    The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done.

    Epstein Barr Virus (EBV)
    Now anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days.
    Neither Dr. Straus nor Dr. Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.
    Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. and CFS the vast majority of physicians and the public still associate Epstein Barr Virus with CFS. Such is the perseverance of error.

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