Dan Moricoli - On the Path - and Recovering From ME/CFS

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dan Moricoli’s Story

I love Dan Moricoli’s story for a couple of reasons. For one, it demolishes the idea that chronic fatigue syndrome (ME/CFS) occurs to malingerers or “weak” people or people who somehow don’t fit in our modern world. A business owner, internet marketer, motorcycle racer, skiing enthusiast, international traveler and deep-sea fisherman Dan was using the modern world for everything it had.

Stress? He thrived in stressful situations. He ate them for lunch. Then he suddenly got ill on a fishing trip – and that was it. Bam! When he tumbled, he tumbled hard. Bye-bye went the health, bye-bye went the business, and later, bye-bye went the wife.

If it could happen to him, it could happen to anybody. ME/CFS and fibromyalgia are equal opportunity diseases – they will take down the least of us and the most of us. They will take down people in superb physical shape (see Jamison’s story), the adventurers (Mary Dimmock’s son) and successful, hard-charger entrepreneurs living the life (Dan Moricoli).

Besides Dan’s exhaustion he suffered from dramatic neurological problems including myoclonic seizures that would cause his arms or even his body to flop around. When his doctor wanted to see them in person he simply climbed on treadmill and started walking. He also experienced difficulty speaking – his words devolving into long slurs when he was in a pre-crash state.

I first met Dan on the first day of IACFS/ME conference in Reno. He had improved enough to get to the conference – he thought. We had a nice dinner – it was prime rib for Dan all the way – and an after-dinner cigar. (That has all changed.). He seemed well during dinner but that was it for him – his conference was over. He had a relapse that night, and I didn’t see him again.

The second reason I love Dan’s ME/CFS story is its ending. Eight years after coming down with a very severe case of ME/CFS, Dan has, at age 71, defied the odds and somehow emerged mostly healthy. In the end what worked for him was a simple, shockingly simple (but not easy to follow) protocol. People have recovered or mostly recovered from ME/CFS or FM in many different ways. (See Health Rising’s growing Recovery Story section on its new Forums
Dan’s story is something else, though. There were no magic bullets, no unusual drugs, no complex supplement protocols for Dan – just a steady dedication to some very basic principles.

The third reason that I love Dan’s story is that even as he was mired in illness he was focused on making a difference. He created the ME/CFS Community and Knowledge Center and then learned how to make professionally produced videos. First came conference videos, then a series of videos revolving around Dr. Klimas’s physiologically based exercise program, and finally video’s on how people with chronic illnesses can benefit from yoga. Don't Miss Another Blog!

But now let’s let Dan talk.

“Pacing IS everything”. Dan Moricoli
What was your health like when you hit bottom and what was it like when you started seeing Dr. Klimas? I had a sudden onset of ME/CFS in May 2006. For almost the first two years I alternated between being housebound and being able to get out and around on a very limited basis. When I was able to leave the house I tried to resume as much of my “normal” routine as I could. That attempt only made me severely crash. So my life was alternating between ups and downs, only the ups were limited and the downs were not. My ups would last a couple of days, my downs would often last for weeks.

In a down period, I couldn’t even think of leaving the house. I literally lived in a recliner chair for days, sometimes weeks at a time. I clearly remember a period of 30 days in which I was too weak to even walk to the bedroom at night. There was a guest bath just off the family room where I spent my time and I had to use a cane to walk the 12 feet from the recliner to the bathroom because I was so “wobbly” on my feet.

During the down periods, the most activity I could manage, other than going to the bathroom, was to use the remote control on the television set. Sometimes I was able to pay attention to the television programs, often it was just noise. Dan Moricoli (2009) – Three Years After Becoming Ill – In a Pre-Crash State Routinely, during a down period, I would “crash”.

That is, my body and mind would simply shut down. I could not move, my mind went black, I did not dream, I couldn’t be awaken by my wife or her dogs entering the room to speak to me or watch television. Upon regaining cognitive function I remember feeling that I was comatose, I knew I was not sleeping.

These “comatose crashes” would last for hours, usually two to four hours, sometimes much longer but I don’t recall any of them lasting more than a day. During a down period, my body would often become so chilled in a 75˚ room that I had to be covered by two or three blankets to not have massive body shakes or I would be sweating profusely in the same 75˚ room.

In those periods I also developed myoclonic jerks. Sometimes an arm or leg would suddenly fling itself up or over, sometimes my entire body would flop around in my chair like a fish out of water for several minutes. Entering or into a down period my speech was slurred and it was very often hard to think of, or even utter, a word, even a simple word like “the” or “and”.

I became a patient of Dr. Nancy Klimas in 2008 as I recall. My symptoms at the time were as I have described above. Join Health Rising's ME/CFS, FM and

Can you roughly chart the increase in your activity levels over time? How active were you when you first saw Dr. Klimas? And a year later? Two years later? How active are you now?

Within the first year as a patient of Dr. Klimas, my condition had begun to improve as she referred me to a sleep doctor, which resulted in my sleep evolving from two to four hours at best a night to an average of five hours a night. She also made me aware of the importance of a well-balanced diet which also helped. We tried a few medications which didn’t have a positive effect.

My activity level in this period did not increase but my symptoms were easing. I still stayed mostly in the house and had to carefully pace myself but I could get around better than before. I live on a golf course at this time and would try to walk a bit during the day but it was not possible for me to walk more than 100 yards or so without becoming so weak I had to rest for a few hours.

“It is so important to pace yourself – not just during the exercise program but throughout the day” Dan Moricoli
In the second year of seeing Dr. Klimas, I finally agreed to do the VO2 Max testing (which she had been recommending for several months). I started out with an exercise program that consisted of two five minute walks with a 10 to 20 minute rest period between them. I did this every other day. After two months of this carefully controlled exercise I started to notice a clear impact on my body. My symptoms continued to ease and I was very gradually able to increase the duration and level of my exercise while still avoiding an anaerobic state.

Dan (2010) – About Ten Months After Beginning His Heart-Rate Based Exercise Program

Just over 12 months after starting what I refer to as the VO2 Max exercise program, I was able to join a gym and use other forms of exercise besides walking although I still wore a heart monitor and carefully timed all my exercise with rest periods between them to keep my heart rate within bounds (again to avoid anaerobic metabolism). Within 24 months or so, I looked to others as having a “normal” life but I was still carefully pacing myself throughout the day. During the day, whenever I felt the least bit tired I would rest, sometimes three or four times a day, sometimes for twenty minutes or so, sometimes I would sleep for 30 to 90 minutes. For more on heart-rate based exercise programs for ME/CFS (and the dangers of over-exercising) see Health Rising’s Exercise Resource Center.

How important was restricting your activities when you were on the exercise program? Pacing IS everything.

How did your diet change? Nancy got me to restrict meat in 2011. I changed to a strict vegan diet in January 2013 and held it for over a year. That helped a little, I have, over the last two months introduce a little fish and organic chicken but have now gone back to a vegan diet.

Yoga – Taking up yoga ended up making a huge difference for Dan – not just physically but mentally and emotionally.

It sounds to me like you at some point “surrendered” to your disease; that is, you accepted that your body now had limitations and that you couldn’t get away with pushing it. You surrendered to the way it was – and that helped both physically and emotionally?

I surrendered to my condition in the first week, May 2006. But did not really begin to focus on helping my body to heal itself until I took up the VO2 Max based exercise program. The level of focus on helping my body to heal itself has dramatically increased since then, first through yoga now through a much deeper focus on yoga and meditation.

Good health and well being is a product of the unison and balance of mind, body and spirit. That is EXACTLY what I have learned over the course of my recovery and what I now practice with full intent and determination. I am now very close to full recovery as a result.

If you can remember how long did it take before you felt you were really onto something with your yoga program?

With yoga, it all depends upon the quality of the instructor and the manner in which the individual practices. Most people in the United States think of yoga as a form of exercise. Unfortunately, most yoga instructors conduct their sessions as exercise classes rather than focus on yoga as meditation in motion. In retrospect, if I had had better instruction, I think I could have begun to feel the balance of mind, body and spirit from yoga much sooner than the 10 or 12 months that it did take to become apparent to me. The depth of that balance, and the level of equanimity I feel as a result, continues to expand and increase.

Conclusions

I’m sure many people are shaking their heads at Dan’s success but it’s not unprecedented. Several stories in the Mind/Body/Pacing Recovery Story section of the new Health Rising Forums involve people who used very rigorous pacing regimens to recovery. It was never a quick process – this is the turtle’s approach to recovery – but it worked. Dr. David Smith in the U.K. was behind several of those recovery stories. Smith uses low amounts of a few drugs and rigorous pacing to get results. One of his golden rules is to do less than you can achieve every day. We’ll be looking more deeply at his protocol in a future blog.

Many doctors, including Dr. Lerner in his antiviral approach, and Dr. Klimas in her multifaceted approach to ME/CFS emphasize the need the pacing and stress reduction. Dr. Lerner goes so far as to say that the antiviral approach will not work if you don’t pace.

Pacing and stress reduction is clearly a important component of many recovery stories. Dan managed his close to complete if not complete recovery using just three elements: pacing, a very closely monitored exercise regimen and yoga. Others who have benefited from Dr. Klimas’s exercise regimen have required more. Francesca Owen, for instance, has used LDN and other drugs plus careful pacing and exercise to improve.

Dan’s yoga practice adds another element. I haven’t done yoga, but it appears to be an integrated mind/body approach that provides the opportunity for physical, mental and emotional pacing – a complete pacing approach. In part II of Dan’s story we’ll be looking more deeply at how his immersion into yoga helped, a special kind of yoga he’s produced for those with chronic illness, his new venture and how he’s giving back to the ME/CFS community.

Check out Dan’s Yoga On the Path website
 

Abrin

Well-Known Member
The second reason I love Dan’s ME/CFS story is its ending. Eight years after coming down with a very severe case of ME/CFS, Dan has, at age 71, defied the odds and somehow emerged mostly healthy.
He continued working at it until he was finally mostly healthy again at 71?

Wow! What an inspirational example on why you should never give up hope.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
He continued working at it until he was finally mostly healthy again at 71?

Wow! What an inspirational example on why you should never give up hope.
No you shouldn't. I wish it was easier but I think the lesson is just keep trying stuff and don't ignore the basics...:)
 

Tammy7

Well-Known Member
I’m sure many people are shaking their heads at Dan’s success but it’s not unprecedented
You won't see me shaking my head..........ever!............no matter how the recovery came about............I am always so happy for those who get better with whatever means it took to do so.:)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
You won't see me shaking my head..........ever!............no matter how the recovery came about............I am always so happy for those who get better with whatever means it took to do so.:)
I'm sure Dan himself was surprised at how it all turned out - he was in such bad shape in the beginning...What a remarkable story.
 

San Diego

Well-Known Member
Wonderful, inspirational story! I’ve read Dan’s story many times and have come to recognize the enormous fortitude it takes to continue the course of tiny, seemingly insignificant baby steps - particularly for those who were previously athletes and could “get in shape” quickly.

I have a little difficulty with one pervasive concept. It occurs not only with ME, but with most diseases. It is the idea that those of us who were extremely active (and I was one of them) somehow have lost more and are more worthy of respect in our illnesses. An Olympian who comes down with CFS somehow proves that it is a “real" disease. A Hollywood actor who gets cancer is somehow more worthy of sympathy as they’ve lost more than other cancer victims.

These attitudes boil down to the value of human life, and I have a little trouble with valuing some more than others. Loss of life and/or abilities smacks us all the same, regardless of how active we were prior to illness. A grandmother who can no longer read to her grandchildren has lost no less than an athlete who can no longer aspire to Mt Everest. Both have lost what makes them unique and valuable.

Unfortunately, I think the same way. I find myself explaining to others, especially doctors, who I “used to be” - knowing that the magnitude of my prior achievements might help to legitimize my illness. While I’m not going to change society’s values with my little diatribe ;) , I’m trying to consider where I contribute to these attitudes and unintentionally devalue the losses of others.

Until this puzzle is solved, stories like Dan’s will continue to be the most compelling. The public and policymakers are much more inclined to believe in ME/CFS when they hear of high achievers being struck down. It is thus appropriate that our campaigns focus on those stories. Let’s just remember that we all suffer enormous losses, even if some of those losses have the illusion of being lesser.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Wonderful, inspirational story! I’ve read Dan’s story many times and have come to recognize the enormous fortitude it takes to continue the course of tiny, seemingly insignificant baby steps - particularly for those who were previously athletes and could “get in shape” quickly.

I have a little difficulty with one pervasive concept. It occurs not only with ME, but with most diseases. It is the idea that those of us who were extremely active (and I was one of them) somehow have lost more and are more worthy of respect in our illnesses. An Olympian who comes down with CFS somehow proves that it is a “real" disease. A Hollywood actor who gets cancer is somehow more worthy of sympathy as they’ve lost more than other cancer victims.

These attitudes boil down to the value of human life, and I have a little trouble with valuing some more than others. Loss of life and/or abilities smacks us all the same, regardless of how active we were prior to illness. A grandmother who can no longer read to her grandchildren has lost no less than an athlete who can no longer aspire to Mt Everest. Both have lost what makes them unique and valuable.

Unfortunately, I think the same way. I find myself explaining to others, especially doctors, who I “used to be” - knowing that the magnitude of my prior achievements might help to legitimize my illness. While I’m not going to change society’s values with my little diatribe ;) , I’m trying to consider where I contribute to these attitudes and unintentionally devalue the losses of others.

Until this puzzle is solved, stories like Dan’s will continue to be the most compelling. The public and policymakers are much more inclined to believe in ME/CFS when they hear of high achievers being struck down. It is thus appropriate that our campaigns focus on those stories. Let’s just remember that we all suffer enormous losses, even if some of those losses have the illusion of being lesser.
You're right. As a writer and advocate - I am so drawn to those evocative stories. I'll continue to use them because I think we need to demonstrate in bold colors just how devastating this disease can be. In fact I've created a program to ferret them out.

But of course it happens to every type of person....and many people who because of ME/CFS never get to achieve what they might of because of it. I would say this disease is great at devaluing people - at least in societies and all too often in our eyes - in every walk on life. Being able to find value even in illness - to stop beating us up for being ill - is immensely important - and not easy to do.

Thanks for the lovely post.
 

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