Basic Stuff

• Name: Bryan
• Country: United States
• State: Alabama
• City: Huntsville
• Gender: Male
• Age: 62
• Education: Ph.D Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Neurally mediated hypotension
  • Irritable bowel syndrome
  • Migraine
• Year Illness Began: 2001

Functioning Interrupted

Most Impactful Loss

The loss of my ability to have the interactive relationships with my children (and now grandchildren) that I had prior to my illness.
The loss of the ability to develop a meaningful relationship with my anticipated soulmate.

My Story

Prior to my illness, I was a very active, very successful member of my community. I was seeing 30-40 patients per day in my busy medical practice, participating actively in my children's daily activities, and playing high-intensity sports for hours at a time. I did happen to be under an enormous amount of stress at the time, both personally and professionally. (I remember noting that I checked the boxes for 9 out of the 10 most common stressful events in life which I had all at once at that time)
During that period, I developed a flu-like illness, which later I discovered must have been EBV (Mono). I had typically recovered from illnesses without difficulty, but this time was different. The fever resolved, but not the extreme fatigue, the body aches, the lymph nodes that popped up everywhere. Within a few weeks, I was struggling to see half the number of patients that I would normally be able to see with energy to spare. My medical knowledge led me to thinking of Hodgkins Lymphoma, and the Oncologist I visited agreed. But after Scans from head to toe, multiple lab tests, and lymph node biopsies, no disease was found. I spent the next few weeks seeing every specialist looking for answers, but finding none. Finally, a Rheumatologist friend, who's wife happened to have recently passed away from complications of CFS, suggested the diagnosis. At that time in 2002, very few physicians, including myself, knew about CFS. In my four years of medical school and three years of Residency training, I never once heard anyone mention Chronic Fatigue Syndrome. But as I looked at the list of symptoms, they matched exactly to what I was experiencing. For better or worse, I had my diagnosis.
The next two years were spent in acceptance of my lost life. My ability to see enough patients to produce my salary dwindled. My physical activity level decreased and was eventually lost as my body could no longer perform what my brain expected. I finally accepted that my life as I knew it was over when I experienced my first Crash and the following PEM during a moving day to our new office location. I had collapsed to my floor after pushing beyond my new limits. My brain had reached the now familiar "Brain Fog" level of cognitive dysfunction. My other physician partners rolled their eyes at me as I tried to describe the symptoms of my illness...they didn't believe in CFS. I swallowed my pride and began an application for Disability. Of course, the Psychiatrist assigned to my case reported that I was just depressed. The Internal Medicine "Specialist" assigned to my case told me that he didn't believe in CFS. His flippant attitude actually led to my approval by default, so I thank you Dr Incompetent!
Weeks have turned to months. Months turned to years. And now two Decades later, I've forgotten how my old life felt. I've been able to continue to see a limited number of patients working a few hours a day and taking Wednesdays along with Weekends as my rest days. After a couple of failed attempts at relationships, I've accepted that this illness will most likely prevent me from finding the wife that I had once planned on growing old(er) with. My now grown children understand that I have this disease, but I'm not sure that they realize how much ME/CFS actually affects my daily activity and my inability to interact with them as much as I would prefer.
Medically, my ME/CFS has always been connected to that initial EBV exposure. The virus has reactivated at least twice a year over the course of my illness. Interestingly, my EBV reactivated in the early days of Covid and has yet to return to negative. (Has my EBV stayed active to protect itself (and me) from this other predatory virus?) As far as treatment of my ME/CFS, I have stumbled upon some things that have helped, and more things that have failed, just like most of us. And I keep looking for the next new miracle cure. I've now lost a third of my life to this disease, and I'll never get that time back.

I do offer my apologies for my fellow medical professionals who have, for the most part, failed in their recognition and treatment of these chronic diseases. Most of the problem goes back to just the lack of education and awareness. Obviously Covid has opened a lot of eyes to this field of post-viral/pathogen related diseases. And Myalgic Encephalomyelitis has finally been included in most medical textbooks as a distinct disease as of 2022. Hopefully all of the research money finally being thrown in our general direction will start to pay off with some benefits in the future.