The actual name of my disease (according to the World Health Organization) is Chronic Fatigue Immune Dysfunction Syndrome / Myalgic Encephalomyelitis (ME). Most people call it ME or me/cfs for short. The W.H.O. classifies ME as “a disease of the central nervous system.” Many people are diagnosed with Chronic Fatigue Syndrome (ME) who do not actually have it. There are people who are diagnosed with Chronic Fatigue (ME) and get better a few years later and who lead fairly normal lives while they are “ill.” Normal is defined here as being able to go to work or school like a healthy person would and is able to take care of personal and home needs. These people most likely had a viral infection or some other problem and not ME.    

    People who have ME have the equivalent physical impairments of someone with end-stage AIDS combined with chemotherapy, according to Dr. Loveless, a leading ME / AIDS researcher. Another doctor, Dr. Klimas, has often said that if she had to choose between having AIDS and ME she would choose AIDS. Why? Because AIDS patients have medications, they live fairly normal lives and they live better lives than people who have ME.

    You should know that ME is not (I repeat) NOT contagious. In order to contract ME you must have a genetic code with certain flawed bio-markers, and then be exposed to a triggering virus (like Epstein-Barr or possibly XMRV). Simply stated – I cannot make you sick.  

    The following are some of the many symptoms of ME:

  • Severe fatigue (that is not helped by any amount of rest)
  • Extreme muscle and joint pain (which is not helped by medication)
  • Vision loss
  • Heart problems – arrhythmias, fainting, and heart disease
  • Chronic cough with bronchitis and pneumonia fairly often
  • Swollen & painful lymph nodes
  • Severe headaches and migraines (occurring most often in women)
  • Sore throat
  • Fever (usually for most days of the week)  

None of the aforementioned symptoms are ever helped by rest or medication. There are a fair number of people who claim that such and such helped them. While I am happy for them it is, again, unlikely that they ever had ME to begin with. There are no treatments for ME. There is currently no cure and no FDA approved treatments.

3% of ME patients will die from this disease. Cancer, however is the leading cause of death for ME patients. Many ME patients do not live past the age of 55. The bottom line is ME patients don’t live long or well.

            I have been given the opportunity to participate in a clinical trial of the first medication that is seeking FDA approval for the treatment of ME. Ampligen is administered twice a week via an IV for at least one year. The side effects vary from person to person. A few people have little or no side-effects while most others have exhibited symptoms comparable to Chemotherapy.

I would like to thank you all for your support through this next year as I seek treatment for my ME. Please keep me in your thoughts and prayers as I commence this difficult and dangerous journey.

Advertisements