+100%-

Most people’s idea of fun summer reading probably does not include exploring a person’s experience of chronic fatigue syndrome (ME/CFS). Mine apparently does – I blew through Michael Gallagher’s memoir of ME/CFS “Run Down: An Endurance Athlete’s Race Against Chronic Fatiguein record time. Following another person’s, step-by-step entry into ME/CFS was actually exciting and validating plus it opened my eyes to the different versions of ME/CFS that are surely all around us.

Ironman

Finishing the Ironman World Championships in 2007 (from Gallagher’s website).

Gallagher also provides a valuable service by couching his ME/CFS story inside his personal story. in the first half of the book, we learn how he grew up, what his family and friends are like and how he chose his career path. This proves compelling as we see Gallagher  – an avid athlete – descend into a serious case of ME/CFS. It also helps to illuminate a second significant theme of the book – the astonishing costs that addiction even in Gallagher’s relatively well-off circle of family and friends – can play.

Exercise – in all its themes – as an enjoyable and health-enhancing activity, as an opportunity to test oneself, as a competitive endeavor, and as an opportunity to bond with like-minded others – permeates Gallagher’s story. Much of Gallaghers ME/CFS story revolves around his attempts to somehow retain this core activity in his life.

Gallagher discovered exercise in the form of running and mountain biking at Colorado State University in Boulder, Colorado. He was basically living the life – skiing, running, biking, partying, and occasionally trying out the latest psychedelics while managing to hold down good grades. While studying for a Master’s Degree at Chapel Hill in North Carolina, he recognized that running sharpened his mind and strengthened him – two attributes that would serve him in his training to become a doctor.

Gallagher made it through medical school, and somehow survived a two-year sleep-deprived, torture chamber called residency that seemed more like Navy Seals training than anything else. He also met his future wife, and trained to become an orthopedic surgeon at Northwestern University.

He also really began running. Not jogging, not working out – but serious running – marathon type running. From there it was natural, if not a big step, to doing Ironmans – a 112-mile bike ride followed by a 2.4-mile swim and to finish it off, a 26-mile marathon. Gallagher was in seriously good shape. Not that he didn’t have some mysterious problems – there was the cough that wouldn’t go away for quite a while and stomach pain that almost derailed his Kona Ironman – but those were minor blips on an upward path.

Next came a stint as a team doctor for the New England Patriots, the birth of his son, a short stint in Rhode Island, and then back to Colorado. With almost 50% of the book done, life is good: he’s got a good marriage, fulfilling work, and a son; he’s living in a great spot and has plenty of opportunities to engage in one of his great passions – testing himself physically.

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Then came the Badlands biking trip. Gallagher surely didn’t know at the time that Coxsackie virus had been shown to trigger ME/CFS in 5-10% of those infected – he probably didn’t even know what ME/CS was – and if he probably wouldn’t have cared. By this point he was an Ironman.  He’d tortured his body in ways few of us have experienced and came out the better for it. He’d pushed it through colds, stomach bugs, injuries etc. Rain or shine, healthy or not, he maintained his fitness. What was a little bug to him?

Badlands Gallagher

With his buddies on the fateful 2014 Badlands trip (from Gallagher’s website)

By the end of his pretty mild (for him) five-day bicycling trip with his buddies, it was clear something was wrong. For one, he’d had to sit out a whole day and by the end of it was exhausted. That wasn’t him at all; in fact, he “sensed a seismic shift” in his well-being had occurred. He had no idea…

It’s here that Gallagher’s story gets interesting in more ways than one. it’s not just that this supremely fit individual gets ill – and really ill – it’s how it happens. Some doctor recently said something to the effect of “every case of long COVID is the same – until you met the next patient – and so it is with Gallagher. Everyone with this disease can probably see something of their experience in his but his experience is also different – in its extended manifestation, in its many ups and downs, and its different symptom course.

Gallagner’s able to track his illness to a specific infectious event – the Coxsackie infection – but his course into ME/CFS is different. In retrospect, he obviously has it, but for several years he doesn’t meet the case definition.

He rests and then tries a shorty – a 5-mile run – that doesn’t go so well. Neither does the 3-mile run afterward. he follows a doctor’s orders – no running for 3 months – and takes up the slack by taking up weightlifting. Another echocardiogram at the end of three months is fine and he’s pronounced healthy. Except now he can only manage 30 miles running over a week (compared to his usual 80 miles).

Looking for help he gets his first exposure to the sometimes maddeningly illogical and dense medical world. Tossing logic into the waste bin, his primary care doctor proposes that he’s just getting older. Somehow in 3 months he’s aged at a record rate. At 41 years of age, his big running days are behind him.

Note, though, that at this point he’s probably in better physical shape than 95% of his peers. He’s still lifting weights and at times can run OK for weeks but always at some point falls apart and has to stop. Then in the fall of 2015, feeling strong, he tries a longer run and gets hit hard, and has to give up exercise for a month.

Tacking a new tack, he tries a slow 13-mile run in Feb 2016 – and does fine! Now he’s got it – he just needs to run really slowly and go on long, slow bike rides – and it works. Soon he’s up to 2-3 hour trail runs and loving them. He’s also waking up at 5 am and biking for an hour and fifteen minutes every morning before work. He’s so jazzed that he splurges on a $6,000 bike.

Gallagher 2017

Back in shape in 2017 (“before it all went to shit”)

Feeling that he’s back to normal, he does what he’s always done – he finds a bigger test – an ultramarathon. Twenty miles in, he’s rolling – feeling great. He soon hits the wall but through sheer willpower manages to finish. He’s surely cured now. How could he not be? He’s just successfully finished an ultramarathon.

In the next step in his ever-evolving quest to explore his physicality he takes on a high-intensity interval training program called Crossfit  – which leaves him feeling stronger than ever. He posts his fastest 1-mile time and  a personal best 10K run. In October 2016, he runs the fastest half-marathon of his life. His illness has become a distant memory.

But then out of the blue, the exhaustion comes back. This time, there’s no warning – no new infection to trigger anything – he just slowly gets worse and worse and worse. Instead of doing ultramarathon he’s now looking for places to sit down at work. After a couple of months off, feeling better, he returns to what he knows – Crossfit – and it works again. By February, he’s running again and signs up for the 2018 Boulder 10K. He finishes – but with a poor time, and then after a rough Crossfit session has to abandon that as well.

Ignoring the on and off-again feelings of malaise, back to the long, slow-intensity running and biking session he goes – but rolls his ankle – putting his foot in a boot. Now he’s in trouble – how to exercise now? Where there’s a will, there’s a way, and he certainly had a will – he takes up stationary biking and swimming – and does more or less fine – which at this point means he’s able to handle the malaise and ill feelings that have become a more or less constant companion.

The ‘demon”, though, has been gathering strength. After an interval workout one Saturday, he feels so sick that he can barely keep from shaking. Aerobic exercise is now completely out of the question. Short weightlifting stints are in. Several months later, an attempt at a shorty – a 2-mile run – utterly wipes him out.

Gallagher has put up a tremendous fight to maintain some kind of exercise regimen. He’s changed his workout patterns (fast to slow) and his type of workouts (weightlifting, Crossfit, swimming). In retrospect, you can see a more or less steady diminishment over time, interrupted for sure by rebounds. Those rebounds are about to end, however. His body has hit its limit. There will be no more major recoveries.

Even housework is becoming limited as Gallagher is now saving his energy for one thing that really, really matters – his livelihood. The head of his surgical department and soon to become a regional chief, whatever his problems with exercise, Gallagher has been clearly rolling at work. He can still handle 12-hour days but now his often quite physically demanding orthopedic surgeries are leaving him exhausted.

About six years into his illness, with exercise becoming a distant memory and work problems starting to crop up, Gallagher turns more and more to the medical profession for help. A Sports Medicine ultrasound of his muscles indicates that he has overtraining syndrome, but a diagnosis is all they can offer. Trips to an endocrinologists and neurologist are unhelpful. Interestingly, chronic fatigue syndrome (ME/CFS) is not on his immediate radar, as he reports that at this point he “definitely did not meet the strict diagnostic criteria” (!).

Gallagher’s case, of course, raises the question – when does ME/CFS really start? Gallagher clearly has at least an incipient form of ME/CFS for many years. Long before he meets the criteria it’s going dramatically impact his ability to exercise. Most of the symptoms seem to be there: he has PEM, fatigue, is not sleeping well, and is starting to have problems standing but cognitively, he’s clearly still as sharp as ever.

Gallagher later reports that he’s confident that plenty of people probably have a similar, rather prolonged onset to this diseases –  and wonders how much better off he would have been if he’d been diagnosed earlier. I would argue that he’s had it since he started having problems exercising; i.e. at the point at which, instead of making him healthier and stronger, physical exertion made him weaker. My guess is that at some point, we’ll have biomarkers that can pick up the point at which exertion becomes pathological. Who knows how many people who just don’t like to exercise actually have a mild form of ME/CFS?

The list of new stressors is growing – he’s becoming alcohol intolerant, sex is making him sick, and lifting something heavy can send him reeling. He’s in touch with Scott Simpson – an award-winning Canadian triathlete and former Ironman participant who came down with HIV/AIDS first – and continued racing – and then got ME/CFS and is now an ME/CFS advocate.

Simpson had had a similar experience – two early remissions sent him charging back into training – only to dramatically and finally relapse. By the time Gallagher talked to him, Scott was having trouble walking short distances but said he was still “healthier than almost every other person with ME that I know…and I know a lot”.

Gallagher begins to consider whether he might have ME/CFS – a thought that nauseates and clearly scares him. Still, as I did in the mid-1990s, and as my partner did 18 years ago, and many of us probably have – he pushes that diagnosis away. Nobody wants to have “that disease” or that nebulous diagnosis.

A functional medicine doctor finds that he has postural orthostatic tachycardia syndrome (POTS), a condition characterized by reduced blood flows to the brain and a racing heart when standing, but the treatments make no difference. When lifestyle and dietary changes, and nutritional supplements fail to move any needles on his health, his functional MD doctor recommends that he abandon the supplements. Close attention to just about everything – the foods he eats, his sleep, his activity levels – and cutting out caffeine, and dairy products – reveals nothing. The one constant – the one factoid he can rely on – is that physical activity makes him worse.

Suffering - Gallagher - 2020

Suffering – 2020

Eventually, and seemingly inevitably, the last major straw breaks – and Gallagher has to give up work. Lying in bed in agony. he continues to descend into a unique kind of ME/CFS hell. Now he’s bothered by lights and sounds and becomes cold intolerant. A 20-minute phone conversation can put him in bed for the rest of the day.

The former ultramarathoner becomes wheelchair-bound Now fully immersed in the ME/CFS world, he’s astonished at the range of stories he finds on sites like Phoenix Rising. An IVIG trial goes wrong at first, but some weeks later he feels a bit better. A surprise weekend phone call from Dr. Hector Bonilla from Stanford confirms he has ME/CFS. Bonilla recommends that he drop the supplements and try low-dose naltrexone (LDN).

Gallagher, a doctor, still has something to learn about the medical profession and ME/CFS. Despite being warned about the Mayo Clinic and ME/CFS, he makes the trip to get access to their reportedly excellent dysautonomia section – a condition he’s been diagnosed with.

It’s pretty much a disaster. After reluctantly agreeing to a treadmill test so that he can get assessed by a cardiologist, he’s shuffled into an exercise physiologist who tells him that he’s deconditioned and needs to exercise more. The fact that he’d been a marathoner, that he loved to exercise, that he wanted above all else to get back to exercise, that he’d made himself much sicker doing that – all that was apparently gibberish to this doctor, who had his own set diagnosis for people with ME/CFS – you’re deconditioned and you need to exercise.

Gallagher had come to the vaunted Mayo clinic hoping for a deep, creative, and thorough dive into his medical situation. Instead, he’d gotten a shoebox approach that mostly duplicated his prior testing, administered by a hack physician. Disgusted, he left early.

(The Rochester Mayo Clinic does appear to be changing its ways. Gallagher noted that a couple of months ago they removed the graded exercise recommendations from their website, and MEAction recently reported that they’d reached out to them to help them revise their ME/CFS protocols.)

By this point, the constant illness, the physical debilitation, the uncertainty, the fear, the lack of progress, and the lack of help from the medical profession had all become all too much – even for him. The pillar of strength – the guy who’d been there for his family and friends when they needed help, the award-winning regional chief and department head, the ultramarathoner participant who pushed his way through almost unimaginable physical stress and pain – was gone. In a poignant and important part of the memoir, Gallagher acknowledges that he’s been broken. He’s become “bankrupted mentally” and “folds”.

Deeply depressed, he contemplates suicide – even going so far as to envision different scenarios. Withouit his wife, who doesn’t seem daunted by his illness and, in fact, enjoys helping him out, one wonders what would have happened.

Even in his distress, he recognizes that it could be worse. By the time he became ill, he had a successful career, a wife, and kids who’d mostly grown up around a healthy dad.

That made me think. What if I’d gotten whacked by ME/CFS when I was forty, as Gallagher did, instead of twenty? What professional and other relationships would I have nurtured? How different would my financial situation be?  What would if I’d gotten ME/CFS as a teen?

Michael Gallagher MD

Michael Gallagher MD today (from his website)

Gallagher recognizes that pacing is critical and over the next summer – he doesn’t really explain how (and may not know) things start to improve a bit. By fall, with his disability running out, he gives part-time work a try and it mostly works. He does a courageous thing and outs himself to his partners with a letter explaining everything – his strange illness p, his ME/CFS diagnosis, etc.

He makes his trepidation about doing so clear in his letter.

“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.

The letter goes over well and he ends up sending it  to several hundred primary care doctors and posts pieces on Medium (“Mountain Biking, Marathons, Orthopedic Surgery, and Chronic Fatigue in the Time of the COVID-19” and “A Year of Turmoil and One of Redemption“) on Facebook.

He’s fully “out” and it works. Old friends and colleagues get in touch, including one who has his illness as well. After that, he writes this book.

By the end of the book, which was published this year, Gallagher reported he was still working part-time, is being careful with his workload, and had not had to use a wheelchair since the summer before. Some silver linings have shown up. His goals for his future (biking around Europe, doing the granddaddy of ultramarathons in South Africa) were, as he put it, “crushed by the illness,” but he no longer feels chained by them. He’s done with ruminating about what he’s lost and worrying about the future. It’s not that he’s given up hope for the future – he still regularly dreams about running – but he’s more focused on the present. He has a greater appreciation of what he has, and he’s a better, more communicative partner with his wife.

With long COVID in the news, Gallagher has written a timely memoir – and you couldn’t ask for a better messenger. Gallagher breaks just about every stereotype that’s been unfairly foisted upon ME/CFS. He’s male, he was in great shape, he was a professional at the top of a demanding profession – in medicine no less – had a happy family life and quite a future ahead of him.

People with ME/CFS and long COVID can read his memoir and empathize and feel validated and be intrigued by the questions Gallagher raises about the nature of ME/CFS and when it begins. Those outside the illness will be struck by the harrowing journey that Gallagher and his family get taken on.

 

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