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.
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.
- Check out Health Rising’s Exercise Resource Center for ME/CFS and FM – Includes links to Dan’s videos with Dr. Nancy Klimas on her program
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.
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.
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
- “I Think I Have A Meditation Disability”
- Lovingly Rewiring the Immune System
- “Gimme Some Loving”: Mindfulness in the Midst of Illness
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.
Your interview is getting stuck at 3:57 spot. I’d like to be able to watch it all.
Issie
Okay, got it to work. I feel your pain. Wish we all had a better answer. You’re on the right track with pacing and paying attention to your body. Hopefully the new things you are doing will help.
Issie
Cort, you do an amazing job informing this community about the most recent news on ME cfs, which help us all a lot. With respect to this video, would it be possible to remove the background music, which is very disturbing, and upload the video again?
Hi Anna,
I’m afraid that that’s Dan’s sphere. I have no idea how to do that. I can ask him if that’s possible, though.
Cort Johnson you are a gift to us all. Thank you for all that you do.
What a terrific, encouraging, heart warming post. I appreciated all the videos especially. So glad you’ve recovered so fully Dan, and so great to see you “live” Cort and to get a sense of you and of your personal experience with ME/CFS. I recognize the wired and tired, the inability to settle and I, too, am a “push through-er.” It’s taken me a great deal of personal work to find the capacity to start shifting that pattern when doing it all by will power never worked. Thanks again for all you do with this wonderful blog.
I’ve been meditating here and there and thinking about starting yoga for a while now. Dan’s story really motivated me to get more serious about it – and about pacing, as importantly highlighted in Cort’s video. I tend to push until crashing also, or at least pushing to the point of stability, meaning more or less plateauing with no real improvements. Years of that probably take a toll, even without frequent crashes.
As Cort suggested, balancing the sympathetic/parasympathetic system is probably key for many of us “overachiever” type-A kind of people. One of the best things I’ve found is the guided meditation available free for download on Dr. Larry Wilson’s website (drlwilson.com but I don’t have the exact page handy). I have no affiliation whatsoever with Dr. Wilson, but his meditation really seems to work to balance the symp/parasymp like nothing else I’ve ever done. Thanks for posting Dan’s inspiring story and for the personal video, and good luck to everyone. 🙂
Cort, this is the most encouraging article I’ve read in a long time. I would like to read more articles in your newsletter about how people recovered.
Thanks so much for posting Dan’s story. I’ve had severe CFS since 1988. I’m bedridden and in pain 90% of the time and have to use a wheelchair. Fortunately, like Dan, I’ve been able to stay positive and make the most of each day.
Thanks Sandra, I do have some more recovery stories on the way. They recovered in a different way than Dan did. Some people have trouble with recovery stories but I’m like you – I find them uplifting.
I love this article so much as I can completely relate! I have gone down a similar path as Dan as you know with the strict discipline, pacing and starting with minimal exercise, and I keep improving! Great to see you on a video Cort! I know how we ME/CFS ers don’t like to hear that “we look great” lol but you really do! You have a healthy glow. Thank you for everything you do for us and keeping us in the loop. I can’t wait to go check all the Links from Dan!
A healthy glow – OMG – it was like agony watching it but thanks. I now know what how it is that my partner who I think looks wonderful is able to look in the mirror and gives a yelp.
Congrats on your disciplined approach and glad to hear you keep improving. I am becoming more disciplined which means several nap or down times in the morning and afternoon. Two things triggered that for me; my partner and signs of worsened health.
Good luck!
Just sending you a big hug, Cort! Maybe watch your video again in a few weeks after the shock of exposure wears off. The gifted, kind “you” we’ve all seen in your posts really shows on your face. Take it from this elder woman: you’re beautiful! Glad you have a honey to appreciate you!
Cort,
As a patient with few resources available to me other than the internet, I am grateful for all that you do at Health Rising. I have been ill for well over 20 years and I am on disability. I have no way of trying the many things that I read about that have helped some patients. Without good insurance and limited funds to even travel where knowledgeable doctors are, I can, through Health Rising, at least be somewhat knowledgeable of all the latest information about ME/CFS and Fibromyalgia that you share with patients. It helps me keep my positive attitude, despite how much I have lost and how alienated from the real world, my life really is. Thank you!
Thanks Kathryn. I’m glad to hear it. Let’s hope something shows up that insurance companies will cover. I too have financial issues which keep me from exploring a lot of possibilities. I am doing the Pridgen Protocol, though, which I found to be about $65 a month – which shocked me since I had heard that antiviral treatments were very expensive. With a discount card tho they dropped from hundreds of dollars a month to about $25 (!) I’ll be reporting on that. So far – nothing terribly major to report – but I would say so far so good.
Crossing fingers 🙂
Thanks Cort,
THank you for all you do for us!
Congratulations to Dan also, and thanks for sharing his insights.
This story provides clear evidence that exercise or Graded exercise therapy (GET), is the key to recovering from ME/cfs.
I think you have a misunderstanding what GET is and what Dan did and how they are different.
A) Dan did not do GET. So far as I know GET is a prescribed program in which you set rather rigid goals and adhere to them. Dan used a very flexible, symptom and heart rate based approach to exercise.
B) GET does not employ exercise testing to determine that problems with aerobic energy production exist and which then provides a heart rate for an individual to stay under so that he/she does not stress his/her aerobic energy production system. The whole idea behind the heart-rate based approach is that there’s something physiologically wrong. That’s in contrast to GET which seems to assume that something’s psychologically; they come from two entirely different contexts.
C) GET does not to my knowledge have you use your wakening heart rate to assess if you did too much the day before
D) Again I don’t know about the ins and outs of GET but I would be surprised if GET put the kind of emphasis on pacing that Dan’s and Workwell’s programs do. Pacing, Dan said was the essential ingredient and as the section on Staci Stevens pointed out, Workwell’s exercise tests often show people with ME/CFS have to cut back their activity levels.
D) The blog explicitly points out that Dan’s ability to recover using this approach is probably quite unusual. It states that most people would probably simply reduce some symptoms and gain some functionality and it provides a link to a woman who did a similar program to Dan’s and did not recover. Not only does it not suggest that GET – which Dan did not do and is not covered in this blog – is “the key” to getting well but it does not propose that a heart-rate based exercise program is the key to getting well either. Staci Stevens, the exercise physiologist, who developed Workwell’s heart rate based program has ME/CFS, has been doing her own program for decades and she is still not well.
E) All recovery stories are individual. If you check out Health Rising’s recovery story section you’ll find that when people recover from ME/CFS they do so in myriad of ways; i.e. there’s absolutely no “clear evidence” that any treatment approach is THE WAY or provides THE KEY to recovering from ME/CFS.
F) Workwell, Nancy Klimas and others actually do find that a very careful, I hate to say “exercise” program because it does not comport with my idea of what exercise is, can be helpful in improving fitness, symptoms and well-being for some. I realize that that will arouse some understandable anger because of the history of GET and ME/CFS but again these practitioners are not doing GET. They are using sophisticated exercise testing to demonstrate that problems with aerobic energy production exist and then they provide a program which uses those results to work around those blockades in order to maintain as much fitness as possible. It just so happens that Dan, for whatever reason, was lucky enough to eventually have his system return to normal.
Thank you Cort for correcting Donald’s statement. I did gasp and missed a few heart beats when I read it, but accurate terminology is so important in explaining our illness and pathways to wellness. I’m sure he just interpreted Dans recovery as being that of GET and CBT because that is what the health guidelines have promoted thus far!
I’m so pleased for those that can agend the Workwell foundation and seek help from such enlightened people such as Dr Klimas, but I live in the UK and I wondered what your thoughts were on how to seek similar treatment here. Or do you know of any clinic like the Workwell foundation. It seems the US have access to more potential ways to lead to better health.
I , like many others have spent thousands out on trying to improve our health without success only to find that we are deteriorating each year. Thank goodness I’ve escaped the ME clinics! ?. However, I think specialist knowledge on pacing is a key factor of which I am at a loss as to where to find it!
Many pwME like myself try our best to pace but are unsure if we are doi git correctly. But when one feels as though their battery is completely empty, how,does one even start a pacing programme. I did purchase a Fitbit and found my resting heartbeat to be around 86 but as soon as I stood up and say walked to the kitchen it would rise to 130/140. Dan refers to keeping within a certain range but what is that range and how does one do it???
He was very fortunate to have the skills and knowledge of Dr Klimas something which we here in the UK and many in the US too do not have. So what do we do?
With kind regards and thanks for your posts! So pleased you are on the road to recovery! Truly?❤️.
Cort- i, too, thank you so much for all you have done for the cfids/fm community. This information by and about Dan Moricoli also interesting and potentially helpful (i am going to get a heart monitor). I also want to say that i have found Reverse Therapy by John Eaton in the UK helpful. It isn’t an approach based on psychotherapy. It is about learning of our full system of energies that we are born with that for various reasons can go offline. When we lose the power of our full energy field that we were born with, our physical system and life functioning can be(and in cfids, is) compromised. I am learning a lot from RT.
Oh how i related to your account of your cfids symptoms. Thank you so much
Thanks Salome. I don’t know much about reverse therapy but I would certainly agree that our energy field has gotten a good whack and anything we can do to support it is good. Congratulations on finding something that helping with your energy.
Great question Fiona. You don’t have to do this expensive and hard to find exercise testing to do a program like this. I’m afraid I don’t know the citation but at least one of links on Health Rising’s Exercise Resource page – https://www.healthrising.org/exercise-resource-center-chronic-fatigue-syndrome-mecfs/ – mentions a way to find a heart rate one can use.
The goal then is to keep the heart rate below that level and then try to do the pacing/exercise programs that are found on that page. Use wakening heart rate to determine if you need to cut back (if it rises cut back on your activities that day).
This costs $10 U.S. dollars but would probably be quite helpful – https://vimeo.com/ondemand/klimasexercise
Staci Stevens recommends deep breathing exercises – see the breathing exercises resource page on HR – and Dan has created a video yoga course for people with disabilities in his Yoga On the Path site – http://www.yogaonthepath.com/
Health Rising also hopes to do a physical therapy blog which recommends specific stretches/exercises which may be helpful in maintaining muscle tone and fitness as much as possible.
Good luck!
On the topic of self care:
After many (18) years of having only a CFS diagnosis, I recently discovered that I have at least 4 elevated autoantibodies, and have since shifted my focus to viewing my condition as primarily autoimmune driven. Once that reality fully sunk in, the entire experience, from beginning to current day, suddenly felt far more starkly “real” to me (the authenticity of my condition/symptoms had been questioned repeatedly at many points over the years, as happens to so many of us) and I was finally able to set the life that I’d been struggling to keep up with aside completely, and turn all of my focus to healing.
Interestingly, I got far worse, in many vital ways at first: a deep hard dip/crash, followed by a very slow and non-linear three month crawl out of the worst period I’ve had in years.
After considerable research, I’ve come to see this as most likely a withdrawal from high levels of circulating adrenaline and cortisol. Adrenaline plays many important roles in the body (including raising blood pressure and blood sugar, both of which my system has trouble maintaining). And (as I understand it) cortisol was isolated and discovered after a pysican observed that his autoimmune patients actually felt better when under stress…this led to the invention of the corticosteroids which are used as mainstay treatments for inflammation and autoimmunity to this day.
This is not to imply that stress is ultimately good for us, just to say I think we have a more complex relationship to stress (and perhaps the act of unconsciously keeping our systems under stress for invisible pay off) than is normally acknowledged.
Cortisol is also a strong stimulant, so when your body is producing higher levels, which it does for many reasons (to counteract the effects of illness, infection, allergy, inflammation, autoimmunity, and low blood sugar, amongst others) a person might have to actually consciously resist the urge to react with habitual over-activity, so as not to burn yourself and your adrenals out…(which leads only to decreased cortisol output, and therefore unchecked and increased damage from inflammation and autoimmunity).
If only we knew this all upfront. 🙁
I had to go through an intense self-enforced several month detox/dip, until I found my new baseline, and was only then slowly able to start re-building my health, and my physical and mental output, but this time on far more stable ground than ever before.
Through this whole process, I was able to have a lot more forgiveness for my own tendency to push myself, which is not an inherent part of my personality: only my post illness behavior.
I have no idea if anyone else can relate to this, or if I’m an anomaly. But it is interesting to think that some of us (even in the broader society at large) could be using various forms of stress, including TypeA-type behavior as a self-generated medication. And/Or, that some of our so-called “driven” behavior could be mostly a result of being flooded with one of our most powerful anti-inflammatories (and stimulants).
Thank you, Dan and Cort, for sharing your stories! Wishing better health to us all, however we get there.
This is so interesting to me because when I do treatments that help – which build my energy and at the same time relax my body – I tend to fall apart afterwards. It’s as if my body has put that “wiredness” in there for a reason. I didn’t experience “wiredness”; at 16 I was much more interested in meditation – which became really difficult after becoming ill.
i have thought many times that the only thing that keeps me going most of the time is the wired tension in my body. if i take a supplement that lowers inflammation i have less pain and tension but no energy!
I agree with “I’ve come to see this as most likely a withdrawal from high levels of circulating adrenaline and cortisol.”
Adrenaline is also a bronchodilator, helping us to breath better. Poor breathing is very common in ME. It also prioritizes blood flow to the brain, hart and liver in case of emergency and it has very powerful anti-inflammatory effects: it is the worlds number one medicine for fighting anaphylactic shock (very strong allergic inflammatory reaction).
Cortisol also increases blood sugar levels.
In fact, I do call cortisol adrenaline’s little brother. I think adrenaline is even more of a physical stress / severe oxidative stress hormone then it is a fight-or-flight hormone. The thing is cortisol is a very powerful medicine with even stronger side effects. Adrenaline is both a lot more.
One thing that helps me in keeping the benefit-to-side-effect ratio of adrenaline in check is realizing that:
* we have an increased base line of adrenaline levels and very often high peaks of it.
* adrenaline is the same hormone that can convince a frail person that he can lift a car in order to save his child without questioning that unrealistic thought (and sometimes even manages to do so).
=> It is fair to say that (ME patients average levels of) adrenaline roughly increases our ability to do things and our endurance to do so by a factor of two.
=> But ME patients average levels of adrenaline roughly let believe we can do and endure four times at much.
=> That is the biggest trap of adrenaline: it can help us, but it does cloud our judgment of what we can do in a chemical induced way, even more so then alcohol does.
=> Be aware that what you can do safely is about four times less then what you feel able to do; even taking a margin of only a factor of three is already riding a wave of adrenaline and depending upon it for daily tasks!
That is where pacing enters the picture: learn how much you can do safely per day, preferably reduce that goal a bit further to not depend daily on the use of adrenaline (but slowly reducing dependency instead) and then set a relatively fixed schedule for the day as you simply can’t judge how much you can do when you’re busy no matter how intelligent you are and how often you stepped in that trap!
This is enlightening for a “Boomer n Buster”. It explains a lot. When I tell people I have crashed, they ask what happened and frequently the answer is “i overdid it”. Their pause always says more than they do; “well don’t do that then”. Which is obvious for people in our condition. And I feel slightly silly then. However, I have been doing this for 20 years now. Am I repeatedly fooled by adrenaline?
Crikey. This is very insightful and useful. Especially as the better I get, the more clouded I get, the more pushy I become, and the more crashed I become. Meaning there is a glass ceiling on recovery.
Thanks, I will use this x4 rule
Hi Steve,
I hope it’ll help you. Of coarse the exact numbers depend on how much adrenaline you push, but it did make me often blind for what should have been obvious.
Adrenaline has another potential pitfall:
often when you feel at best, especially when you feel energetic, busy and at best simultaneously, you may be close to your worst and prone to an incoming deep fall.
That’s likely very high amounts of adrenaline pushing you very hard trough a bad time you’re in, making you utterly blind for the fact that you are at worst rather then at best.
To my opinion, when I really am in a better period I feel obviously better but also calm and not desiring to do all sorts of things and catch up with time I lost.
Yes! Thank you dejurgen: a good reminder that adrenaline is a bronchoidalator as well.
I have a difficult time getting enough oxygen (in, around and/or to my brain), and the more symptomatic I am in this way, the far more “wired” I am too. I’m glad to be reminded that low oxygen levels alone would cause excess adrenaline release, because I’ve mostly come to think of it primarily as my system’s response to low blood sugar, low blood volume/pressure, and inflammation.
And I really appreciate your 1/4 rule as well. I’ve always understood this general idea to be a part of pacing, but (maybe somewhat embarrassingly) I’ve mostly ignored advice on pacing, because some parts (but definitely not all) of me feel better the more I push. This has always made me feel like a bad CFS-er, either in the true corectness of that diagnosis, or in my incongruent actions.
But I think this could very well be the trickery of adrenaline, as you suggest. I also think this is a direct effect of the POTS: I’m best when lying down for long periods, or when in motion, but nothing in-between, which puts another invisible hand on my back, always pushing pushing pushing…
I think you’re absolutely right, you have to make intellectual decisions for yourself based on your whole history and your comprehensive understanding of the condition, and not be fooled into responding to any one moment’s circulating levels of adrenaline/cortisol.
I think this is one more reason (on top of many obvious others) why programs like the one Dan describes are so difficult to follow, and so important to highlight: they may be counter-intuitive to our own powerful chemistries (for some of us, anyway).
I also strongly relate to all you are saying Martha. I have Crohn’s; an autoimmune disease, which I have always supposed was secondary to the CFS, but maybe not…
I have really low blood pressure, and my average daily resting heart rate is 50.
I worked (decreasingly) in a high stress environment for the first 15 years of my illness, and was somehow able to (mostly) operate 8-6 mon-fri, and collapse the rest of the time, and when questioned about the likelihood that I could be ill under these conditions I always suggested that adrenaline was like a drug which allowed me to push myself through it. However, this is the first time I have ever seen any mention of this is CFS circles.
I also recall back in 2000 I had dark rings around my knuckles which is a sign of addison’s disease, and I am certain I have had adrenal issues.
I can look back, and though I operated, usually to a high standard, it was always in a kind of ’emergency’ status, which was useful in my job I suppose, but harmful in my personal life.
I would be really interested in knowing any more about your research into this, and advice on proceeding. How are you now, and what things are you doing to improve/recover? Best wishes, Steve
Hi Steve! Thanks for your comments. I’m glad to learn here that I may not be the only one fighting my own internal chemistry. 🙂
I got really motivated to make big changes once I learned that I had elevated antibodies, and had an Adrenal/Cortisol saliva test done through my naturopath which showed plummeted levels of cortisol in the morning, and extremely elevated (and ever-rising) levels as the day progressed (the opposite curve of what should be). I took those two things as fair evidence that my system was under very real duress, and so I read quite a lot about cortisol at that time.
No one (that I know of; though I’d love to if anyone else does) is writing comprehensively about these issues, and how these issues of adrenaline, cortisol, illness/inflammation, and autoimmunity effect people’s basic symptoms and behaviors. It’s a shame, because even just the parts I was able to piece together (mostly by googling different combinations of words) were enough to convince me that there are some basic connections that should be far more obvious than they are normally made out to be.
In fact, I think many of us could have avoided the (destructive parts of) the mind-body explanations for mysterious illness all together, if the health field were to simply acknowledge the basic (purely physiological) functions and various effects of adrenaline and cortisol, and their subsequent (and often fully intentional) activation of the sympathetic nervous system.
In any case, I used my own findings to give myself formal permission to change course entirely, and to once and for all treat my system as though it was very sick, very inflamed, operating in an autoimmune state, and very stressed (mostly as a result, not a cause). I’d been reading about treating illness from the broad standpoint of functional/holistic/naturopathic medicine for many years, and had had some significant success using those principals, but lacking a solid diagnosis (as well as my own push-crash behaviors) had always gotten in my way of full commitment…until this spring/summer.
I’m only in month four of that current experiment. I’ll have to write up the whole experience if I come out significantly and sustainably different than when I went in. (One can always aspire to Cort’s recover story section!) But…in the more realistic meantime, (and so as not to de-rail the conversation any further here) I’d be happy to send you a few notes on my current process if you’re particularly interested.
You can reach me at martha@iamtheelephant.blog
In any case, best of luck in your own trials!
@Martha: “plummeted levels of cortisol in the morning, and extremely elevated (and ever-rising) levels as the day progressed (the opposite curve of what should be).”
Now that is an interesting test result! I was not aware that it rose from very low to very high in ?some? patients.
That links with my simple view on when we regenerate. It is often said ME patients have less energy in the morning than when going to bed. Let us assume it is more then a feeling and is quantifiable so.
Now say a healthy person has an energy level of 100% in the morning. During the day it gets lower to reach for example 75% in the evening. If each day would be identical enough, sleeping will get the person from 75% to 100% next morning or let him regenerate 25% of full health.
Now let’s look at a ME patient. Let us suppose the patient is at 40% in the evening. If it is true the patient has more energy before then after sleep, then let us assume he has 25% of full health in the morning. If each day would be identical enough, the patient needs to reach 40% of full health/energy again at the end of the day.
Now notice the difference: The healthy person is active and loses 25% of full health during the day and recovers it at night. The ME patient wakes up at his worst, does some activities AND has to regenerate 15% of full health! Rather then being able to “consume” 25% of energy reserves this patients needs to rebuild 15% of full health energy reserves (a difference of !40%! compared to the healthy person)! No wonder he can barely do a thing. Oddly enough, it seems nobody sees this huge elephant in the room (need to regenerate whilst doing activities) ???
To me, that is a big part of the puzzle as to why pacing often is nothing near enough to recover. Even when many of us reduce our activities to near nothing, we just lack “spare energy” to regenerate and rebuild our strength. The elephant in the room IMO is that the sleep cycle is the biggest drain of energy we have, worth more drain then what a healthy person consumes a day by doing activities. That’s why I believe my odd “night plan” helped me break and reverse the downward vicious circle I was in: there is so much more margin to cut during the night then during the day for us!
Now, linking it with cortisol rising from morning till evening: the reversed cortisol curve seems to track our reversed energy levels so it strengthen this “regenerate during the day” idea somewhat further.
Note: messing with cortisol to “correct” it is not the answer IMO. Nor are sleep meds or more relaxed sleep IMO.
Thanks for sharing :-).
Cort, you are an inspiration to so many, thank you for featuring Dan and sharing his experience with pacing. Dan, thank you for sharing and for featuring Cort in the video. I now better understand the differences between pacing (stay within your limits) and GET (push yourself). Thank you so much!
Oh, Cort,
Thanks again for such a well written, encouraging article.
I am about 80% recovered now, its been 15years though.
It can be done.
I agree with all the points made by Don and I too found Yoga & Meditation an essential part of my recovery. This condition is best approached in a holistic way. Seek out the best Practitioners you can afford and Pace yourself, would be my two pieces of advice.
As originally envisaged GET was not like this programme. However some therapists, seeing that it didnt work, have adapted the idea so that it is less prescriptive. Some therapists still encourages you to exercise more than may be good for you.
When I bought my heart monitor I discovered that going upstairs to bed would send my heart rate through the roof and I needed to stop and rest/ take the stairs more slowly. A doctor’s encouragement to exercise had sent me into a serious relapse during which I thought I’d be bed bound forever. Almost any activity was too much.
I’ve improved enough to get out of bed but it’s a fraction of the life I had. If I try to keep up with my family I will fall asleep, sometimes for a full day. My body still does not respond normally to activity.
I used to go to the gm, I miss it. I’ve had to accept that my body’s response to activity is probably not going to reset. My partial recovery relied – and still relies – heavily on supplements, not simply on using the heart rate monitor.
I’m sure that most people’s experience on these program mirror’s yours: while heart rate based exercise programs can be helpful it don’t typically lead to a recovery. This is true for every type of recovery story, though; there are people who used probiotics to recover, people who used antivirals, people who used mold avoidance, people who used supplements and people like Dan and Bruce Campbell who found that pacing, very careful exercise and mind/body techniques made the difference. They are anomalies but they do provide possibilities….
CFIDS Self Help, by the way, fpr those interested in this approach, is a great place to learn about both physical and mental pacing – http://www.cfidsselfhelp.org/ Toni Bernhard’s book series on How to Be Sick provides a wealth of information on how to be ill in as unstressful a way as possible.
Cort, I love your articles! How do I get into Dr Nancy Klimas excercise study.
Michelle
I’m afraid the exercise study is closed. I was one of the last participants. It’ll be fascinating to learn what they found though. They gathered a huge number of data points before during and after exercise. What a great way to understand ME/CFS!
Wow Thanks for this. I learn so much from both the articles you write and comments and you write so well Cort, it’s a real gift to us. As I have improved I have experimented with activity and exercise to very slowly push my edges out a little more. I used to do loads and loved it and cried so much when all I could do was walk like a snail at best. And yes what you say about getting your body going when it might not want to but finding the way to do it that’s supportive of recovery and not damaging is a very personally tailored thing to do and a balancing act every day. I think if you have been fit before it might help as you know the differences between ordinary resistance to moving (which is a very human experience) and the body saying I really can’t do it today. Since having this illness I have been forced or maybe after reading this article I might change my language to ‘embraced’ making friends (or at least trying to learn the language so I can be on speaking terms) with my physiology, biology, muscles and mind in a way I never would have thought possible. It’s good to hear such a positive story.
Sorry I have expressed myself very poorly in my previous comment about knowing the difference between different ways your body feels. Re-reading it I can see it’s clumsy and not right, what I was trying to say is it’s a balance every day and this changes from day and this is a very difficult process getting to know your body and what it can do.
Cort, another brilliant article, which I really need to go through again. And you’re kind nature flows out of your video, which I really enjoyed watching you having read your blog for several years. Like putting a face to a name or something! You should really consider doing more of those.
What you were saying about pacing, and starting to think of addressing the ‘wiredness’; I quite agree. I think meditation is amazing for down regulating; however, whilst this is great to do a reset, what seems to be required is a way to retrain the brain’s systems not to get wired up for no reason in the first place. Like you say, a lot of work. A lot of people who recover seem to have gone that way. I’m trying through ANS Rewire programme, and I am half way through. I have just crashed again for the 2nd time in two weeks, with doing ‘the push’. I also have always pushed. Boomed and Busted all the way. I am going to go back and read the comments about adrenaline as this also chimes with me. I have experimented with avoiding crashes, which I believe allows the baseline to ‘inch’ upwards; whereas after a crash it seems that the baseline is damaged; and required more time to continue improving again. But I feel like my baseline is better after 2 months of the programme, though recovery still feels a long way away.
I for one would watch any videos you do; and I know some people who are not up to reading blogs, and others who don’t read so much who could access your work. If you were able to interview some of the people who’s research you pass onto us that would be so interesting. Having said that, please keep writing.
Thanks Steve,
I have thought about video interviews and if I can snag a camera I will do that.
I agree that reducing the wiredness that’s present in the first place is the issue – not an easy thing to do given that at least for me it seems to be hard-wired into the disease.
How about we think of this so-called ‘exercise’ as ‘movement’? The moment you say exercise, images of endurance and aerobic activities fill the mind. What Dan is describing is to me, clearly a program of movement and paced activity, rather than exercise.
I got sick in 1983. I do my gentle stretching movements in bed as its too strenuous to do standing up, and I find them essential. My limit for the day is 2 km walking equivalent (just over a mile) divided into two sessions with the dog. I have never been able to push past this limit in 18 years. My doctor told me I should have a brisk walk to get the heart rate up, I said that would last 5 paces, then I would need 3-4 days recovery. At that point I get labelled non-compliant and neurotic. Some years ago I did yoga regularly, very gently for 10 mins a day, every third day, as I needed 2 days to recover. We are all affected differently by this illness.
I am very pleased for Dan that he is able to do so much more, long may it be so. I wish for us all to find our way through this maze.
Well said, it’s very hard to think of what Dan began doing as “exercise”. Kind of completely blows one’s conceptions of what exercise is.
Hi Cort! I have enjoyed receiving your newsletter over the past year or so. Just saw you on video and was inspired to write. I will be happy to tell you about my 30 year struggle with CFS, but meanwhile, please tell me what company makes that Hawaiian shirt you were wearing in the video? I like it and will try to get some if they have 3XL sizes. I have a bunch of Tori Richards shirts from Hawaii and like them, but want more. Also, do you know any good CFS/ME practitioners in Southeast Asia, maybe Bangkok, Thailand? I have lived in Southeast Asia for about 23 years and have only been to the US to see family about 4 times, so need to find a practioner closer to me. Cheers, Matt
I am so glad you asked! My partner dragged me, literally dragged me into a clothing store in Sedona. The owner lead us over to the Hawaiian shirts. My partner laughed – he, she said, would NEVER get one – but I liked it. We got two – I believe they were Tori Richards – and then lo and behold Costco started selling Cooke Street shirts at a great price and so the great Hawaiian shirt buying spree began. I honestly felt helpless before it and shockingly over the last two years I’ve probably bought twenty of them. I love my Hawaiian shirt collection! I’m a slerder 6’6″ – hopefully they will fit you. I feel like I’m bringing some color and good feelings to the world when I wear them. 🙂
Unfortunately I do not know much about Southeast Asia except that I remmber that Tae Park in Korea I believe has used IVIG successfully in his patients there. Dr. Michael Maes is in Thailand I believe as well.
Hi Cort, Great article! I started following Dan M.’s pacing plan years ago but did it inconsistently..and then I stopped all together. When I was following it tho, I felt it did help me. In your article there was a link I clicked on to sign up for a Facebook ME exercise/pacing group. While signing up however I hit a wrong key and lost the page. Would u happen to know the link to this group? Thanks!
Many thanks to both of you, Dan and Cort. Your willingness to give of yourselves to help other people with ME/CFS and related illnesses has no doubt helped countless numbers of us.
I have been ill since 2005 and it was though your websites that I learned that conservation is key. I learned about conserving energy first. I learned to conserve some of my money, always carefully weighing cost vs potential benefit of seeing various practitioners and trying various protocols.
Through my five severely ill years, having a place to go and read about others who were facing the same challenges, helped diminish the isolation and loneliness. I found the recovery stories insightful and especially appreciated the stories people told of their visits to various practitioners.
Though the majority of the time I am still functionally in worse shape than a cancer patient on chemo (my 26 year old son has been fighting lymphoma since 2016), or someone with congestive heart failure(my mother, 81, has MS and congestive heart failure and she is always asking me what she can do to help), I think I have been able to accept my limitations while still while working toward improvement in any way I can.
Thank you both again, and thank you to all of those who have shared of themselves on these sites.
Cort, you’re the glue for the global ME/CFS community.
I don’t know how you manage to keep us continuously updated and motivated to improve our existence.
I’m so grateful.
(Hong Kong)
I first read about Mircoli’s incredible recovery when I was I nthe depths of my own illness. Often unable to get out of bed, limbs to weak to lift a teacup, unable to have a conversation. I was in dispare, everything I was reading in online support groups is “there no cure, no hope, so just give up, complain, or blame”. Hearing his story gave me HOPE and so I started a self designed graded exercise program and heart rate monitoring. On my best day I would do 60% of what I wanted to do, stopping if I felt sudden weakness or fatigue. I also began a meditation practice which helped me let go of the story, to accept my body exactly as it was, and most importantly- to stop praying for my recovery and start praying for all beings who were ill. Today I’m 90% improved. Still have to be mindful of energy output, still have flares, still have incredibly weak immune system, but I went back to school at 40 years old and will graduate this spring with a masters in mental health. I hope to work with people with ME/CFS and all the other related invisple illnesses. Recovery is possible. Don’t loose faith. ????
How about that Danielle! Big congrats on your progress and your master degree. How about that.
I’m sure that didn’t happen overnight – it took time and perseverance.
Please consider putting your story in Health Rising’s Recovery/Recovering stories section – https://www.healthrising.org/forums/resources/categories/mind-body-pacing-exercise.125/ (You don’t have to be recovered all the way. Anything over 80% is fine>)
It sounds that you like Dan, discovered a higher meaning in life – something beyond yourself – and that helped 🙂
I think what this article illustrates is not the benefits of “graded exercise” but the variety of diseases, and their severity, that are diagnosed as ME/CFS.
Nice to see you Cort. And well edited Dan. Glad to hear that you beleive that pacing is a way forward for you Cort. I couldn’t agree more.
May I recommend the free Pacing Tutorial on Bruce Campbell’s website?
http://www.cfsselfhelp.org/pacing-tutorial