I am an orthopedic surgeon and former marathoner and triathlete living with chronic fatigue syndrome (ME/CFS). Below is an an email that I sent to my colleagues describing my battle with ME/CFS that has robbed me of my ability to do much of what I love. I think many people can relate to the words below, especially in this time of Covid-19. This is a story that is as much about our healthcare system today and a plight that is often ignored as it is about one man’s illness.
As many of you have witnessed or heard, I am back at work after a nearly 10-month hiatus. I know my absence caused extra work and a modicum of consternation for some of you. I can’t express enough my heartfelt thanks for those of you that reached out to me while I was absent, covered my cases and call nights, and have welcomed me back with open arms and big, mask-covered smiles. If you want to feel appreciated in your job, a medical leave of absence is a sure-fire way to do the trick.
Many have asked me not just how I am feeling, but what my diagnosis is. I addressed this briefly at one of our Rock Creek meetings this summer explaining that I have Dysautonomia. I gave a cursory answer at a time when I was still grappling with the diagnosis itself. The fact of the matter is that I have chronic fatigue syndrome (aka myalgic encephalomyelitis; ME/CFS), which includes many signs and symptoms, one of which for me and many others is dysautonomia. I have been reluctant to tell anyone other than those close to me this because, frankly, there is a stigma attached to those words. Worst of all, the stigma is at its ugliest within the medical community itself, particularly amongst physicians, perhaps most so among surgeons.
It has been an incredibly difficult diagnosis to come to grips with. It has not only made me sick, changed my life dramatically and stolen many things that I love, but it has also caused me angst having to explain to people what is wrong with me or hide my diagnosis. Well, I have come to realize that there is no shame in being sick. I have a chronic illness, just the same as someone with Lupus or Sarcoidosis or Glomerulonephritis does. I didn’t ask for this illness or get it because I was mentally or physically weak. I got it from a virus, much the same way that the majority of ME/CFS patients do.
My ME/CFS began in 2014. I had a viral illness (likely coxsackievirus) that had not cleared when I went on a strenuous 4-day mountain bike trip in North Dakota (The Maah Daah Hey Trail for those who’ve been there). I felt terrible during the trip yet rode 8+ hours the first day in incredible heat. It’s a day I will never forget, in part because one of the other guys on the trip was a Kaiser physician from northern California who got heat exhaustion and felt even worse than I did for several hours as he vomited repeatedly and we walked our bikes to the end of the trail. Upon returning from the trip I took what at the time seemed like an eternal nine days off from exercising. But when I went to go for a run for the first time, I knew something was not right. Over the course of the next several years I would struggle with being able to exercise, experiencing post-exertional malaise. The fatigue, nausea, flu-like symptoms and whole-body illness that I used to feel only after an ultramarathon or ironman started showing up after a hard workout, then after an easy run, then after lifting weights, then after OR days, then doing the dishes. I went from running 80 miles a week to being unable to walk to the end of the block. During my absence I spent weeks on end unable to go up and down the stairs without great difficulty. I became sicker and sicker to the point that loud noises, bright lights and cold temperatures made me physically ill. To say it was both scary and torturous is an understatement.
Thankfully, with time, my health has improved to the point that I have been able to return to work. Operating is still incredibly important and rewarding to me, but I am no longer able to do the complex cases that I once did. Lifting, pushing, pulling and repetitive use all cause me to still have symptoms and put me at risk for relapse. I have had more relapses or “crashes” as they are called than I could possibly remember. Still, I am incredibly grateful that I have improved to the point that I am able to work part-time. The stark reality is that for most patients with ME/CFS work is impossible. And less than 5% of people get back to normal health.
I have learned an incredible amount about ME/CFS, about myself, about being a patient and about the healthcare system. It has been humbling and at times terrifying. Way back in 2014 I was told I was just getting old at age 41. I was given many different diagnoses by a handful of specialists including cardiology, neurology, endocrinology and infectious disease. I, myself, thought perhaps this was “Overtraining Syndrome,” a problem that athletes encounter when they ignore what their body is telling them and fail to take adequate rest from training. I know I was guilty of that. But something didn’t add up. I looked at the criteria for ME/CFS and didn’t have some of the required symptoms. I went looking for answers outside of Kaiser, seeing a functional medicine doctor who spent a full hour with me probing incredibly deeply to try to figure out what was going on. My symptoms waxed and waned and I managed to never miss a day of work or avoid a surgery because of it.
Then, in 2017 after a run, my symptoms came back worse than ever. This started a cascade of worsening crashes over two and a half years that culminated in me leaving work. I saw several more physicians at KP in 2019 and had scores more labs and tests. I was told to gain some weight by one physician. I was told to just train better by another, who refused to hear me when I kept saying I was unable to exercise. No one accused me of being depressed or anxious or having ulterior motives, but I have read the stories of those patients who have been accused of such along the way to their delayed diagnoses.
I continued to be confused as to what my diagnosis was. Did I have multiple sclerosis? Was this an autoimmune disease that no one could identify? Was I still just pushing my body too hard? Did all those years of waking at 4am to get in a 10-mile run before operating all day do something to me? The doctors that saw me were not able to figure it out. I kept repeating “I have post-exertional malaise,” but those words did not resonate with anyone. I now know that hearing those words alone should have been a lightbulb moment for any primary care provider. Sadly, there simply is a lack of awareness and understanding of ME/CFS in the medical community.
In the fall of 2019, I took two weeks of sick time to try to rest enough to get better. It didn’t work. I tried meditating in place of exercise. I got worse. I often spent my off-days recovering all day from operating for 12 hours the day prior. Then in early 2020, the illness became ever-present. Rest didn’t provide any relief. Each day at work was a constant uphill battle. Finally, on March 11th, I broke down. I told the other chiefs that I was sick. That I had been hiding it for months, nay years, and that I had no choice but to take a leave of absence. I did my last surgery on March 13th and promptly went home and lay in bed or on the couch for the next 2 months straight, often in tears, always in agony.
As we all know, that was the beginning of the Covid pandemic and the end of elective surgery for months to come. The whole world went into crisis mode. For me, as a patient, that meant an end to my ability to be seen for answers. As I grew sicker and sicker, I was told I simply wasn’t a priority. All resources were being focused on dealing with Covid. My neurologist who seemed to be the one physician really digging deep to find an answer was made into a hospitalist and bid me adieu. I felt abandoned. The timing was terrible. I was terrified. The sicker I got, the less I was able to get help. One particular night I felt so sick I was not sure I was going to see the sunrise, yet at that wild early part of the pandemic, I was too scared to go to the hospital and risk getting Covid.
Ultimately, one of our physician leaders helped me get another neurologist who was willing to consult with me over the phone. I got a new KP PCP, as well. I still have yet to meet either face to face. By that time I had a tentative diagnosis of dysautonomia from my functional medicine doctor and my new neurologist was willing to entertain the idea of an IV treatment that has been of some help to a subset of patients with dysautonomia. She was also willing to consider an outside referral. I opted for both. As I sat in the infusion center on the first of two back to back days there, I got curious and sometimes sympathetic looks from the nurses and my colleagues. If only they knew what lay ahead for me. Twelve hours after the second infusion ended I awoke with what felt like a lightning bolt hitting my head. Tachycardic, dizzy and in excruciating pain, I briefly contemplated whether I was having a stroke. Again afraid to go the hospital, I lay perfectly still till morning when I was able eventually to get a hold of my neurologist’s nurse by phone. The neurologist ordered steroids for me to treat what turned out to be aseptic meningitis. Much as I will never forget that fateful day biking in North Dakota, I will never forget the pain that night with meningitis.
The second option of an outside referral lead me to one of our nation’s most prominent hospitals in June of 2020. I had been warned not to go there by another ME/CFS patient (also a triathlete), but I felt desperate and this hospital had expertise in Dysautonomia. Much to my chagrin, it was an utter disappointment. I was asked to repeat all of the labs I had already done and was asked to get on a treadmill for a VO2Max test. I had been warned about this exact scenario. I refused the treadmill but was told that the only way for me to see the cardiologist there to address my arrhythmia and tachycardia was to comply with their orders. I relented and walked on the treadmill knowing just how sick it would make me. Ultimately, I was seen only by an exercise physiologist and not a cardiologist, who told me that I needed to exercise more. Graded Exercise Program they call it. How ignorant could the experts at such a renowned hospital be? It was demoralizing on one hand, but not unexpected on the other.
Had I been without friends and family to help me, this may have been the disappointing end to my search for an answer. But thanks to the internet I found a physician at Stanford who specializes in ME/CFS. With the help of a well-connected friend and calls by my wife, I got in touch with the head of the chronic fatigue syndrome clinic within the department of infectious disease at Stanford. His name is Dr. Hector Bonilla. He is a wonderful clinician and human being. He called me on a Saturday and spoke with me and my wife for nearly 2 hours. He asked me every minute detail about my illness. At the end he assured me that my diagnosis was ME/CFS and that he had some treatment options. His number one recommendation was “You have to slow down, Michael. The more you do, the higher your risk for a crash. You are a high performer, but you can’t be this way anymore.” It was devastating and such a relief at the same time. We scheduled an in-person visit for September, but Covid would spoil that, just as it had my chances for so many other face-to-face visits.
During this time, I imagined the fate of so many other patients with medical problems in our society. A new lump without an evaluation. A biopsy postponed. A new terrible diagnosis. There would be no undivided attention given to these patients. Many got in the back of the line for treatment made even longer by the preparations taking place for the onslaught of Covid cases. I also thought of the other millions of patients that either have ME/CFS and are too ill to live a happy life or are undiagnosed because their physician lacks awareness of ME/CFS or they lack the resources to get diagnosed.
As a result, I am writing this to spread awareness of ME/CFS and to help get rid of the stigma attached to patients with it. The best summary of ME/CFS that I have seen is here. Along the way I have read and watched a lot. ME/CFS most often starts with a virus, but it is not one disease. There are many causes. Just as a headache can be from a brain tumor, aseptic meningitis or dehydration, ME/CFS can be from a virus, endocrine dysfunction, GI infection and, shockingly, even craniocervical instability (CCI). Why such disparate etiologies cause the same cluster of symptoms is unknown. The unifying symptoms, though, are post-exertional malaise and fatigue. You can read the truly astonishing story of one patient, Jeff Wood, with CCI HERE who diagnosed himself and was cured of ME/CFS with surgery or watch the documentary Unrest of Harvard PhD student, Jennifer Brea, crippled by this disease whose doctors were stumped by her case for years labeling her mentally ill. Ultimately, she read about CCI and had surgery herself, also resulting in a cure. Most patients, however, are not so fortunate.
In this time of Covid, ME/CFS is coming to light in a way it never has before. You may have read or heard about Covid long-haulers. 60 minutes did a piece on it. This is the exact scenario many with ME/CFS have. The refrain that is uttered repeatedly by patients is “I had a virus and I never got better.” I encourage you to take a look at the 60 minutes special.
As both General Patton and Coach Lombardi were known to say, “Fatigue makes cowards of us all.” I think each of us can relate to this statement. I have come to understand it in a way I never wished to. My hope is that something good comes from me having this awful illness and that all physicians will soon come to understand ME/CFS and those who suffer from it in a way they never have before.
Thank you for taking the time to read this and I encourage you to take time to look at the links I sent.
Michael D. Gallagher, MD