+100%-

In June, on our East Coast trip, my partner and I met up with Dan Moricoli in Palm Beach, Florida.  I’d been corresponding on and off with Dan for at least ten years.

At age 75, Dan is basically completely recovered from ME/CFS; he bikes, works and travels – and a former sports fisherman – loves a good hog snapper…:)

In the late 2000’s, Dan had created the public CFS/Knowledge Center and the private ME/CFS Community Center websites to help people with ME/CFS. He’d learned and had a passion for photography and video and had created numerous professionally-done ME/CFS videos with patients and ME/CFS experts such as Dr. Klimas on exercise, sleep, getting disability and other matters.

After Health Rising published Dan’s story in 2015, we’d lost touch for a couple of years, but now Dan was back with an improved website and a new feature – a worldwide map of the ME/CFS Community.

Hearing that we were going to be in South Florida for an exercise study with Dr. Klimas, Dan generously treated us to dinner at Captain Charlie’s Reef Grill, put us up and persuaded me to do (gulp) a video. (See below). The dinner was highlighted by a dish Dan strongly recommended – the hog snapper, which to my partner’s dismay, ended up featuring the entire fish, head and all, and which looked like some prehistoric creature from the deep.

I chose to see the fearsome fish as something of an analogy for Dan’s battle with ME/CFS – a battle that he ended up winning.

First, Dan’s story.

Dan Moricoli’s Amazing Story

Before he got sick in 2006, Dan Moricoli was a hard-charging business owner, motorcycle racer, skiing enthusiast, international traveler and deep-sea fisherman. If anyone was living life, Dan was. A successful businessman, he was able to travel and play as hard as he wanted. Interestingly, he also had a bit of a spiritual bent, having participated in EST and other transformation courses.

Those practices would serve him well in the trying times ahead.  When Dan fell, he fell hard. After becoming sick on a fishing trip, he became largely bedbound. This no-nonsense, guy’s guy spent weeks in his lounge chair, stirring only to go the bathroom. Looking back, he describes being in kind of a coma state.

“Entering into a down period my speech was slurred and it was very often hard to utter, or even think of, a word, even a simple word like “the” or “and”.”

Dan struggling to speak in one of his “down periods”. They could last for days.

Dan wasn’t just exhausted; his nervous system had gone haywire.  During a crash, he’d either become so chilled that he’d have to pile on the blankets in a 75 degree room, or the opposite – he would be drenched in sweat.

His limbs, and sometimes his entire body, began to flail about in wild myoclonic jerks.  At times, it was hard to think or even utter the simplest of words, and when he did, sometimes they would become terribly slurred. It was as if his brain couldn’t keep up with the demands of speech.

He found his way to Dr. Klimas, and under her care some things improved. His sleep increased from two to four hours a night at best to an average of five.

A little stress was often all it took to send his limbs flying, sometimes striking him in the face.  Once, at a doctor’s urging, he stepped on a treadmill to demonstrate this. His neurologist suggested that his brain had forgotten how to direct the basic processes of his body.

An exercise test at Dr. Klimas’s clinic in 2008 revealed a broken energy production system – and an opportunity. Because the test revealed the heart rate at which Dan’s energy production system started going south; i.e. when it turned anaerobic; it gave him a safe heart rate at which to attempt to rehabilitate himself.

Dan then began one of the most anemic “exercise programs” imaginable. Aerobic exercise as we know it was basically out.  Dan’s program began with two five-minute walks with a 10 to 20 minute rest period between them, every other day. If his resting heart rate upon rising in the morning was increased at all the next day, he put the next exercise period off. If his symptoms increased, he did the same thing. There were many postponements.

But after two months of this oh-so-carefully controlled “exercise program”, he started to feel a bit better. His symptoms eased and he was able to very gradually increase the duration of his exercise period.

After about 12 months he was able to join a gym and – continuing to use his heart rate monitor to ensure that he never exceeded his aerobic capacity – begin other kinds of exercise.

Twelve months later, except for the need to take 3 or 4 rest breaks (20-90 minutes) a day, he was leading a fairly normal looking life.

Revival

Dan was probably felled by a vicious pathogen which rapidly rendered this robust man almost comatose, leaving him with speech difficulties, flailing limbs, temperature regulation problems, a blasted energy production system, stimuli hypersensitivity, enormous fatigue and devastating post exertional malaise (PEM).  It was probably a hit and run attack; a pathogen which managed to make its way into Dan’s central nervous system and was ultimately vanquished, leaving an enormous mess behind.

The really interesting thing about Dan’s story is that, unbeknownst to him, his body at some point began to revive.  He started his exercise program, after all, in the midst of extraordinary symptoms. His limbs could flail about, his speech slur, he would lose temperature regulation, etc. after any significant exertion.  To recover, he’d have to lie in a dark room for hours.

Dan Moricoli

It must have been like threading a needle at times but Dan somehow managed to slowly, carefully return to health.

Yet his body must have either already begun its recovery process or had capacities unknown to him because, over the next two years, he continued to slowly improve until he was essentially recovered.

The point is that we often think we know our bodies, but Dan clearly didn’t.  His body gave him no indication whatsoever that it was now safe to engage in a very limited exercise/pacing program.  It gave him no indication of the capacities that could be slowly teased out of it.

That he didn’t know his body wasn’t just true for Dan; the medical community believes it’s true for just about anyone who goes through horrendous illness.  Studies indicate that the fastest road to recovery for the sickest among us – those in critical care who have been kept alive by ventilators and other machines – is to mobilize them as early as possible – surely long before they feel up to it. That often starts with very mild exercises done in bed (sitting up, turning back and forth) and progresses to walking short distances.

“Real exercise”, of course, was out of the question for Dan; it would have caused his body to rebel and his symptoms to worsen. Done correctly, though, despite his physical fragility, his body was able to respond to very small exercise increments interspersed with lots of pacing. That’s the big surprise, in my book.

Dan said that that pacing, which for him consisted of lying down and allowing his system to recover and reset itself, was the key. Dan ended up creating his own kind of personalized graduated exercise program – when the exercise, such as it was, was too much, he stopped it. He said there were many days when he skipped it altogether. Over time, though, the exercise/pacing program took him about 75% of the way – and then a “very carefully monitored” yoga/meditation practice took him the rest of the way.

He believes that what is referred to as ME/CFS is still part of his physical being, but he accepts it rather than fighting it or bemoaning the fact that it’s still there. As he has since he became ill, he lives within his abilities and consciously tries to help his body heal itself.

Near Complete Recovery

At 75 years of age, Dan feels he’s at least 95% recovered from his devastating illness.  He typically rises between 5:30 and 6 am and usually rides his bike between three and ten miles.

He still paces. When he gets tired, he rests.  Otherwise he’s normal – his grip is strong, he lifts his heavy video equipment; he works and travels with his partner.  A recent exercise test indicated – as he suspected – that his aerobic energy production system has returned to normal. In the afternoon, he usually naps for an hour or so – not an uncommon thing for a 75 year old. He rarely goes to bed before midnight.

Dan’s recovery using an exercise/pacing technique is unusual, but it isn’t unprecedented.  Several stories in Health Rising’s Pacing/Exercise/Mind/Body recovery story section feature people who used careful pacing/exercise to slowly recover.  Full recovery with any therapy is unusual but my guess is that many could probably expect some reduction of symptoms and an improvement in fitness and functionality – not a bad outcome in a disease that is so treatment resistant.

Staci Stevens and Workwell documented how effective their heart rate based “exercise” program can be.  Stevens’s protocol is similar to Dan’s; like Dan, she focuses on short periods of heart rate managed exercise interspersed with long rest periods. She also recommends deep breathing, yoga and other disciplines that drop the heart rate and reduce stress.

One person, after doing Workwell’s two-day exercise test and embracing their heart rate based exercise/pacing program, was able to stop her worrisome decline in functionality and improve her symptoms, fitness and functionality significantly over a year.  A subsequent exercise test revealed that her aerobic energy production system was still broken, but it also showed she’d made remarkable physiological gains. Her fears of becoming incapacitated by this illness were gone.

Heart Rate Monitor Based Exercise Program Improves Heart Functioning in Chronic Fatigue Syndrome (ME/CFS)

As Dan did, Staci Stevens emphasizes how important pacing is. Most of Workwell’s clients don’t know their bodies either – they usually think they’re much healthier than they are. They’re flabbergasted to find out how quickly their aerobic systems fall apart under the stress of exercise. For many, their exercise/pacing program requires that they cut back their activities at first.  That can take enormous discipline, discipline that Dan Moricoli clearly had.

“Resistance is Futile”

Dan’s ME/CFS illness was unusual in so many ways. He became unusually ill, he had unusual neurological symptoms, he used an exercise program, of all things, to get better, and he recovered completely.

Dan came to this illness in his mid-sixties after years of, for want of a better word, transformational work, that may have prepared him well for the difficulties ahead. He said that when his illness occurred, he simply accepted it – making him probably one in a million.  He didn’t bemoan his losses, rail against the unfairness of it all, indulge in self-pity, or the “woulda coulda, shoulda beens”.

Somehow, he simply accepted his changed situation. Because studies show that negative emotions have the same effect on our immune systems as an infection, it’s possible that Dan’s unusual ability to accept what was going on helped him avoid a further immune hit.

The Great Gift

 I have come to know what is really important in my life and live accordingly. Dan Moricoli

Dan’s deep immersion into yoga and other practices paid dividends. In fact, they did more than improve his health; they changed his life – and gave his story yet another unusual twist. Looking back (now recovered) he sees his illness, as devastating as it was at the time, as nothing less than a great gift to him.  Dan has repeatedly told me that in his mid-70’s, he’s having the best time of his life.

I have very clearly come to see that ME/CFS has proven to be one of the great gifts of my life. It certainly didn’t appear that way for the first couple of years of my illness, which started in May 2006, but I have since come to very firmly believe it.

The illness provided the impetus for him to, for the first time, achieve balance in his life.  It’s possible this formerly hard-charging, motorcycle-racing, sport-fishing adventurer needed something as dramatic as ME/CFS to change his ways. Yoga – which for Dan is so much more than exercise – played an important role.

Dan on his Recovery

 

It turned out to be perfect “medicine” for him.  Dan’s body had been broken. He couldn’t trust it anymore. Most of us probably try to shun our now strange bodies, push those body sensations and pain signals away or simply try to push through them.

With yoga, Dan turned inward and embraced his body’s foibles, its weird sensations and its strangeness. Instead of fighting it, he listened to it, accepted it, became a partner with it, and used it in his yoga practice to propel himself “inward to meditation and mindfulness”. This was truly acceptance of a different nature. With both of the stress response systems in our bodies broken (HPA axis, autonomic nervous system), Dan’s acceptance of everything associated with ME/CFS could only have helped.

Dan got so much out of yoga practice that he created a website called Yoga On the Path, dedicated to helping people with the kind of limitations he’d faced.

The true practice of yoga is open to everyone, regardless of their physical condition. It has proven so beneficial for the many physical and cognitive challenges that I created. For me, the continuing practice of yoga and mindfulness are an essential part of my well-being.

One can see Dan’s yoga, meditation and mindfulness practices as a further extension of his pacing – pacing for the mind, which resulted in a new kind of appreciation for life. Dan doesn’t need to go sport fishing or motorcycle racing to get a charge out of life anymore. The former adrenaline junkie is content as he is.  His path was a difficult one – a baffling and severe illness, a divorce, the loss of his house – but it has also reaped dividends.

The quality of my life is due to the balance of mind, body and spirit I have learned to maintain. I have a far greater appreciation of myself and the manner in which I can live to be a fully active individual, contributing to society.  ME/CFS did not create that balance but it was the impetus for me to learn about, create and maintain that balance.

Balance

Now recovered, Dan has found a new balance in his life.

Dan’s not the first to achieve such insights following an illness. The remarkable effects that the practices Dan engaged in can have on immune functioning and well-being were demonstrated by Donna Jackson Nakazawa in her book “The Last Best Cure”.  Donna was a healthy, athletic journalist before she was suddenly felled by an autoimmune disease that left her paralyzed for a time and with enormous fatigue, frustration, anger and bitterness.  Kept alive by strong immune drugs but with a low quality of life, Donna, in her very last best attempt at health, turned to mind/body work.

“The Last Best Cure” describes a year in which Donna immersed herself deeply in mindfulness, meditation, yoga and other practices. Remarkably, it worked.  By the end of the year, Donna’s consistent application of these disciplines didn’t mean she no longer had an autoimmune disease – she still did – but she was happier, more functional (riding a bike (!)) and her improved immune test results left her doctor shocked.

From The Last Best Cure Blog Series

When my partner and I left Dan he gave me a copy of a book, “The Wise Heart: A Guide to Buddhist Psychology”, by Jack Kornfield, which had constituted a kind of bible for him. Dan said he’d listened to the audio version so many times he’d practically memorized it. That reminded me that going this route takes commitment and work.

As someone who went through a very serious case of ME/CFS and emerged on the other side, I asked Dan what advice he would give to someone with this disease. Not surprisingly, the answer was not an easy one.

Whether new to the condition we call ME/CFS or a long-term sufferer, I believe the first and perhaps most important thing one can do is to accept the fact that your body has changed. There is no quick fix. There are few doctors who know very much about it. You cannot continue to live your life as you were previously accustomed to without suffering and making your condition worse.

The path to recovery may or may not be open given your level of affliction, and progress on the path towards wellness is slow, very slow. It requires full intent and determination.

What resources would you suggest?

Of course, I immediately think of Dr. Nancy Klimas in Miami, and Dr. Lucinda Bateman in Salt Lake City also immediately comes to mind. There are other physicians and medical practitioners, of course, but they are so few in number for the millions of us around the world who have ME/CFS.

 

One place to refer to, although it is far from complete, is the Worldwide Resources page at cfsKnowledgeCenter.com. Perhaps of greater importance to some is the new worldwide member map we have created at ME-CFSCommunity.com.

 

This map locates and provides members of the community email access to the thousands of other members of the worldwide ME-CFS Community for more personal communication and assistance.  Over the years, I have learned that the best, up to date information on local resources as well as various means to cope with the disease comes from those who deal with it daily.

 

Current technology now allows us to easily locate members of our community geographically. Thus our new and constantly updated map allows us to really make it easy for our members to communicate with one another without the need for forums or other more cumbersome avenues.

I found the big map fascinating. I found 10 people with ME/CFS/FM I didn’t know about who lived around me in Las Vegas. Because the map is embedded in Dan’s website you get to communicate with people there. It’s a great communication and collaboration tool.

Patient Stories

Dan is capturing patient stories and asked me to sit for one. I talked for over an hour (he said he had A LOT of editing to do…:) and this is what came of it.

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