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.
Dan at the Reno Conference – just before his crash. Notice the cigar in the shirt pocket.
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 (registration required)). 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.
But now let’s let Dan talk.
Dan Moricoli
“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.
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.
Dan Begins Heart Rate Based Exercise Program
“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.
- Check out a full range of video’s on exercise – the dangers and possibilities – and ME/CFS in the media section of the Health Rising Forums.
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.
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 Moricoli on Recovering From ME/CFS
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
Facebook Exercise Group
If you are serious about exploring the effects a heart-rate monitor based exercise / pacing program can have a Facebook group has been formed. If you would like to join please leave your name and email address and I will pass it on. You should be committed to personally engaging in this type of program to be in this group.
Oh now, this just makes me want to cry! I am so happy for Dan Moricoli! I had used his V02 Max videos for a while. Wish I hadn’t given up, but can begin again. What a dear man to give back to the community. It gives those of us who are older hope. Thank you Cort and Dan. This is priceless.
PS I turned 50 not long ago and have been so worried I would die because of the ONLY studies I know of of the average age of ME/CFS being 58. I will stop thinking this way because of Dan. Huge gratitude to him! 🙂
Alisa,
May I ask what studies you are referring to and what you mean by “average age of ME/CFS being 58”?
Dear Alisa, because I couldn’t remember this long enough to explain it, I believe the example given below will provide somewhat of an answer. Average is the median age and mean is…. see below…. point being that since there are a lot more people who were diagnosed in their early to mid 30’s and have had it for 20-25 years, their age is 60 and above now. There are fewer young children and teenagers diagnosed so if “the average” by math definition were used…. oh, I’m lost again…. but here’s an example.
A Simple Median vs. Mean Example:
Here’s one I like to use when describing the difference in practical terms.
You live in a town of 1000 residents who are all earning roughly $80,000 per year.
To keep it simple, the median and the mean are roughly $80,000 give or take.
Your town is real nice and reminds Warren Buffet of his childhood. He decides to move in.
He takes in $1Billion this year.
While the median income for the town remains at $80,000 (because the middle number is still $80,000 as are the other 999, there is only one outlier making a billion), the arithmetic mean income for the town is 1.08 Million Dollars!
🙂 Dan got ME/CFS after he was 58.
There has been one study in which it was suggested that people with ME/CFS die earlier but that “study” had gaping holes in it. It was not something I would give a lot of credence too. I believe there was one study – which was statistically more rigorous – which did not find anything like that. I think it was by Buchwald – but really I don’t think there have been any really good studies…
I wouldn’t worry too much about dying in your fifties. I’ve had Fibro since about age fifty. I’m now age eighty-three and other than fibromyalgia with chronic fatigue, and just being in general somewhat frail, I have no other serious health problems. All my organs are fine and the only Rx I take are a low dose of alprazolam (Xanax) for sleep, a low dose of generic Ritalin each morning to clear brain fog and energize me enough so that I can fix myself a meal and do a little bit of picking up around the house. I also take a low dose of pantoprazole for reflux. I do not take anything for cholesterol and blood pressure except Niacin and cod liver oil. I learned that Rx for both of these cause side effects that I do not want. I eat Udi’s gluten-free bread, bagels, and pizza, grilled wild Alaskan salmon and rainbow trout, white low-fat cheese, nuts, veggies, dried beans, rice, and fruits. Occasionally, I splurge on a little dessert. I also take GH3 supplement, Vitamin D, and Curcumin (w/added black pepper … for better absorption). I also from time to time have a hot cup of lemon-infused “Calm” … a magnesium drink. I too have to pace myself throughout the day. Occasionally, I can get out for a couple of hours, but I have to sit down to rest from time to time. I long for a cure, but so far have not found one. I am thankful I no longer have the muscle pain I used to have.
Glad to hear this Lera 🙂
Alisa –
What is past is past. The future starts right now . . . I wish you well on your path towards wellness.
Thank you Dan! I’m a new sufferer and these are the words I want to live by.
Dan, Yes this is the routine I have been following for the past ten years or so and I am living a fairly normal lifestyle. I still need 12 or so hours of rest and sleep daily, but otherwise by pacing myself, muscle strengthening and stretching exercises and a well balanced healthy diet, plus practicing stress reducing techniques, I am living a good life.
What an incredible article. Thanks so much Cort for sharing. I am so happy for Dan as I would be for any person who recovered or partially recovered from such a debilitating illness.
While I am very happy for Dan and his story, I want to caution some of my fellow ME/CFS friends not to feel too deflated if you haven’t achieved the same degree of success. I have been a vegan/vegetarian (with the exception of some healthy fish) for 45 years, done pacing for 22 years, and do a form of exercise called GYROTONIC which has many similarities to restorative yoga. I also take Low Dose Naltrexone. LDN and GYROTONIC have helped relieve the horrible Fibro pain I experienced, but I still have CFS, and it is worsening as the decades continue to grow. I am a staunch believer in healthy eating and lifestyle, pacing, LDN and GYROTONIC. Wishing all of you the very best!
Great point Cindy…
There must be many types of ME/CFS. All you can do is try different approaches and see how it goes. There is no one size fits all treatment. Besides his phenomenal success at it I like what Dan’s doing in part because I think it would be good to do anyway. His approach or similar approaches only help one handle the challenges of having a chronic illness, I think.
Good luck with your search!
A humble suggestion for Cindy:
Consider trying different a different dietary approach. A vegan diet is good for cleansing from time to time, but doesn’t provide ample amounts of B12 and other nutrients, let alone cholesterol which is needed for adrenal and other hormones.
Perhaps a vegetarian diet would help you at least stop the ‘worsening’ you mention?
I would be interested in knowing where Dan was living when he got sick; where he went on that fishing trip; and where he is living now.
Lisa, I’m interested too. I got sick May 14, 2006…mother’s day. I was in Big Bear Lake CA when it hit with the biggest bang (so weak going up stairs was hard, then an episode where it hit like a train. Felt like a major allergic reaction but I was eating food at the moment which I was all used to…major heart racing out of my chest suddenly like never had ever before, so weak I could hardly stand, could only walk a few feet, fever, red and enlarged tonsils, very pale). I had been on the East Coast for about 9 days a couple of weeks before that. However before the trip I had gotten what I thought was a flu. I thought I would be ok in time for the trip which departed about 6 days after I got sick but come the day of the trip my parents had to help me roll my clothes and load up my suitcase…a girl who was independent and packed her own suitcase since around 1st or 2nd grade. I recall getting on the bus w/ my class for the 3-4 hr trip from Reedley CA to the San Francisco airport and being totally passed out asleep all but about 10 mins of the trip. On the trip we had a breakneck pace with only about 5-6 hrs of sleep night due to sight seeing and travel to see sights. While on the trip, about 3 days in I got a sore throat and very runny nose type of cold…I had hadn’t even felt 100% or returned to health since the flu before the trip. I lacked an appetite about the 2nd morning of this cold and could only face a little fruit and some scrambled eggs. After that, on the way to Arlington National Cemetery on the bus I got car sick (this was not something I normally experience) and yelled for a bag but didn’t lose it. While at Arlington that day it was warm and I suffered and struggled hard. The slight hills there and steps to go up and down where wayyy more challenging than they should have been for an 8th grader that was supposed to be “healthy” so I thought. I remember giving myself a pep talk and telling myself I could make it, all the while wanting so much to appreciate this opportunity to see history and all it took to pay for our freedom over the years. Before this trip for a few months I recall getting 5.5-8.5 hrs of sleep which I was usually okay or even energetic on but instead having to force myself to stay awake, alert, and upright in class and in PE. I felt so fatigued I narrowly avoided having to call my dad to pick me up b/c of it. I had not experienced such a thing before and this fatigue made no sense. I had gotten enough sleep so I told myself to suck it up and push on, drink water, rest my head on my hand, etc. Being in cool air helped and water. In retrospect I think I was experiencing POTS at the onset of ME/CFS which my dad never had known what it was called but he’s suffered from it off/on over the yrs and esp as a kid and into his early teens. I recall as a petite kid carrying my heavy backpack to the bus in heat around this time of ’05-’06 and feeling so wilty, fatigued, thirsty, even a bit dizzy. I experienced this in PE too. I had been in Yosemite Aug. 2005 where many international travelers are. Not sure if that played a role. I also got my cycle for the first time up there, so major hormonal changes where happening (Broderick and others have cited this can play a role in ME/CFS). And, in 2005 I started noticing a hunching spine…I saw some kids leaning back in their seats b/c of laziness and I did too but because it felt more comfortable in a way. I was anything but a lazy student. When I tried disciplining myself to sit up completely straight it hurt and I’d be in pain the next day. I found out around 2006 or 2007 I had Scheuermann’s Kyphosis on top of the ME/CFS which took about a year to get a diagnosis of. This is consistent w/ Dr. Peter Rowe of John Hopkins findings on neuromuscular strain and kyphosis in kids with this. I was always prone to tight muscles also as a kid, even needing massages and chiropractic. I was a go-go, precocious, high-energy, driven kid that loved and still loves learning and people. There’s my back story in brief, not sure if it connects with anything. I went on to be house and bed bound after May 2006 collapse. I had red and enlarged tonsils during this time period and for many months after onset I felt like I had the flu (off cytokines I believe). Getting up to pee was a big energy task. Brushing my teeth and washing my face (at times this was just splashing water on my face) was all I could muster. This sometimes took hours to build enough strength to do and pep talk myself into. Perhaps I’d also sit to wipe under my arms or my feet. Then I’d return to bed exhausted. A shower was every 4-6 days. It would take that long between showers to get enough energy and stamina to be able to shower again. My mom would have to come in to wash my hair while I bent over. Holding my arms above my head and the scrubbing motion was too much for me. My hair needed washing 2-3 times w/ oily type skin too. When I couldn’t do this shower routine sometimes my dad would help me wash my hair at the sink. I experienced sensory overload when riding in a car much of the time for the first 1.5 years especially. I would feel as though I was going to have a seizure if the car was not stopped. I also experienced a similar feeling when trying to look at a large view of scenery such as the palm tree lined circular drive where I live. The whole view of it was overwhelming. I had to view it like snapshots, almost like tunnel vision.
Jane, I strongly believe you have Lyme disease. Igenex.com is the only lab with accurate testing. Please go http://www.ILADS.com and find a LLMD to help you.
I was, and still am, living in West Palm Beach, Florida.
I had a stomach flu for three days before becoming ill with ME/CFS while during a fishing tournament in the Florida Keys.
I am homebound and frequently bedbound. I pace in a rigorous way, at a great cost: no social life, hardly seeing friends nor family. Yet, the rewards of this pacing – stopping deterioration, thusfar – remain gratifying despite how it starves me from social life. But here is the rub (I never thought I would have the chance to speak of this here, it’s now or never!): I was and still am an utmost … fishing fanatic! Since childhood. From way up north in Canada where I live I frequently flew south to Singer Island very near your hometown and fish black tip sharks right from the beach! What a thrill…Tarpon in the Florida Keys, a dream… If golfers think they are obsessed with their sport, they have no idea how passionate a fisherman can be… I could fish 365 days a year. This may sound silly but I am not joking: The only thing I can’t mourn or accept and be serene with about this illness, is the thought of never going fishing again in my life! – So, since your approach on healing seems to involve a philosophical or spiritual stance, I would love to hear from you, Dan Moricoli, what advice do you have on how to “accept” the loss of a passion such as this one… which I gather you know very well.
(To tell you the truth, I would love even more to hear about your favorite fishing style or technique or species or experiences! But that would be somewhat off-topic…)
Christian –
I was a avid fly fisherman for many years prior to my contracting ME/CFS. I built my own rods, tied my own flies and made many trips to rivers, streams, bays and oceans in search of trout, snook, bonefish and tarpon. Obsessive is not the word for it. It was way beyond that.
One of my best friends is a professional guide in the Keys. He quite literally begs me to come down and go out with him, at no charge by the way. Over the last few years I have a couple of times. But when I do, I now go just for the clean air and the joy of being out on the water again. I quite literally have no desire what so ever to fish again. That part of my life is behind me. It’s not that I am not physically able, I am. I guess I just accept change.
I am writing you about fishing because I think that my adaptability to change is one of the main reasons I am not stuck in being sick, if that makes any sense to you.
Life is what it is. Accept that fact and get on with it as best you can.
I’ve said this bit of my story before but: after a few years of not being able to participate in all the sports I love (skiing, hiking, cycling, swimming, baseball) I went into a depression just as the spring baseball season was starting. I missed my sports tremendously. My husband bought me a recumbent bike with 2 cantilevered wheels on the back. He put 2 large batteries on the back and all I need to do is press the thumb pad on the handlebar and away I go. I cannot tell you how much pleasure this gives me, even if we just go down the road a bit. Yes, I miss all I used to do but I came to accept that my life has hit a different stage. I’ve learned a lot of patience but don’t always have it for myself. Still learning.
I guess my point is although I may never again participate in the lifestyle I used to have, I’ve come to terms with this by recognizing that I DID all those things. I skied at the top of Whistler mountain, I hiked and travelled and danced the night away. I’m proud that I lived my life to the fullest possible at that time. Now is time for rest and healing, and if not healing then acceptance-the hardest thing at times to do.
It’s normal to grieve what’s lost. I have found other things in life that give my great pleasure. Does it replace my past activities, not quite but heck that’s life, and life changes all the time.”Life is like a box of chocolates-you never know what you’re going to get” F. Gump
Now we know what Christian would do if he got well 🙂
I met a guy in North Carolina who was the same way. It was not about eating the fish – he never ate the fish – it was being out on the boat and fishing. Like Dan people would take him along because they loved having him on the trips.
I get those jerks often when I’m dealing with toxic mold exposure. I have mold induced CFS.
As my recovery continues the myoclonic jerks have steadily declined. I now have them only occasionally, sometimes weeks and weeks apart, and then only my left arm moves a bit.
Hi,
I had the privilege of meeting Dan at the Miami CFIDS support group on Thursday. It is good to see and hear about recovery stories because it does give you hope that you can lead a closer to normal life than what many of us seem to be living now. Likewise, its great that he is using his energy to help aid others and provide awareness of this condition.
Another viewpoint. I’m happy for Dan and any others who have overcome this disease. But I feel it gives the impression that we all can cure ourselves. Just as this disease comes in infinite shapes and degrees, cures are never one size fits all. And that is true of diseases with known causes and cures. I felt a bit slighted after reading this, again, thrilled for Dan but it felt like another “ME/CFSers are only sick because they’re lazy” article. And why does everyone who “cures” themselves feel the need to sell their secrets. If I found a cure it would be available for any and every one who suffers. It’s bad enough it’s all about money for the government. Just sayin’.
I’m afraid we’re just stuck with the fact that this is heterogeneous disease and there are multiple ways people recover from it and this is one of them.
Is it true that “everyone” who gets well is”selling” their secrets. I think not – I think the vast majority take up their lives where they left. Some people do feel called to stay in the game, so to speak, and inform others and some try to make a living doing that. I think many of them feel very strongly that they want to make a difference. Few people are probably financially well off enough not to have to support themselves at the same time.
I think Dan’s approach must be amongst the easiest financially to try. It just requires some video’s 🙂
I would point out that Dan very early on, before he had much improvement, opened a website that was committed to helping himself and others understand this illness and get better.
Please remember that Bruce Campbell shared his recovery information, website and textbook at cost price for many years His dedicated support have improved the life of hundreds of people.
The on-line self-administered course that he and Dr. Lapp devised is still free.The very low charges for on-line classes after his “retirement” pay for a part time administrator and the extensive website which is free to all. .
The healthy, safe and easy pacing and lifestyle alteration techniques and small on-line class sizes make for a great learning situation from which many of us, myself included, have improved our health remarkably. I bless him daily.
http://www.cfidsselfhelp.org
My above comment about Bruce Campbell’s course is in no way mean to criticize Dan Moricoli. He is a lovely inspirational man and I have been able to tweak a lot of my health support practices precisely because Dan has been generous enough to share them. Nutrition, hydration, electrolytes and the warning signs of my early morning pulse rate are some of what I have learned and find helpful to me.
I love his very inexpensive videos and think I have copies of all, or nearly all of them. Worth their weight in gold to me.
Dan’s efforts to raise money for CFS/ME/SEIDS research is both very laudable and inspirational. I am so thrilled to read of his improvement and then recovery and to send him a bit of pocket money/ cup o coffee money when I can.
We have had Cort’s very helpful blogs sharing some of the scientific reasoning behind Meditation and Yoga in the Last Best Cure book featured. Dan’s videos, that book and my weekly Yoga class have reinforced my determination to continue with the practice on what is hopefully alternate days.
I feel that I gain by looking at multiple sources of information to inform my health with this dratted illness. Thank you Cort for being part of this process.
I TOTALLY agree Anne, I am happy that Dan has found a way to manage his illness, but to say that he is healthy, and CURED?? I really take offense to making it sound like he has his life back, because it doesn’t, it sounds like he continues to suffer within the boundaries that he has set for himself. I would never come out saying I am healed unless I was completely healed back to a Pre-illness state!! I am talking I am back to building fences, decks, remodeling if needed, mowing my lawn, weed eating, gardening, working, going from morning to night with refreshing sleep, not sleeping 12-14 hours daily, cleaning my house, keeping up with laundry, vacations, and just living life to the fullest. I take BHT which helps suppress the viral components of this illness, I have less crashes, but I still have to limit myself DAILY, I don’t call that healthy. Don’t give the NIH or other agencies any reason not to fund us because all we need is Yoga, and Pacing. Sorry for being a Debbie Downer, but unless I am 80-100% back then I am sick, I don’t call pacing healthy.
Dan is definitely 80% back but it’s a different 80% than your 80%. He’s in his seventies you know…He stated he feels at near normal health for his age.
None of the yoga studies in FM or ME/CFS, by the way, suggest that it is curative. Anecdotal reports don’t count for much at the NIH. Studies do. I don’t think you have to worry about Dan’s story impacting research funding.
For the record . . . I have NEVER said that I was cured.
I consider myself around 90% back to having a normal life and am beginning to believe that I may . . . I just MAY . . . fully recover in time.
I do believe that it is within our power, each of us, to advance on our path towards wellness by striving for unison and balance of mind, body and spirit.
For me, that means, ACCEPTANCE of my condition. I do not fight it or resent it, it just is. PACING, staying within my limits for physical and cognitive stress. PROPERLY FEEDING and EXERCISING my body by slowing, and carefully, to expand my limits and help my body to heal itself. MEDITATION to free myself of the “monkey chatter” of my mind.
Curious what is BHT
Pretty amazing, and so close to home. I am so much better now than earlier years, but not quite as good as I was in other remissions. I hope that with new research we will find out how to protect these improved periods and stop the slide back. July 5, 1985 about 9:30 AM (Hong Kong) will mark my 30 year anniversary of an illness first diagnosed as ME and later in the US as CFS.
Now you’ve piqued my interest Loetta. So what happened on July 5th, 9:30 am in Hong Kong so many years ago? If you don’t mind sharing.
Also have you ever experienced a complete or near complete remission?
Cort, I sent you a note via contact form.
So, with literally tens of thousands of hours of ME/CFS activity on the professional level ie; research, treatments, observation, discussion, experience and some levels of recovery, to even claimed full recovery by some, surely, there must be a “strong” indication as to the underlying CAUSE, not just a lot of speculation that we’ve heard over the last 20 years.
Until we completely know and understand what is in our waste products, will we understand this disease and all the others. RP
I agree with Cort.
It’s pretty obvious that there is no one “underlying cause’, as everyone has grown up in different environments, been exposed to different environmental chemicals or mold, and experienced different bacterial, viral, parasitic or fungal infections.
So the treatment or many different treatments will be different for each of us.
Marcia, I haven’t seen any kind of proof that there are a multitude of causes of this disease. If that were the case, surely one or more of these so called multiple causes would be clinically proven by now.
This looks much more like so called Autoimmune situation where a pathogen like Lyme evades the immune system but the altered immune system keeps on firing and causing collateral damage, especially to the liver and kidneys over time.
The different degrees of severity and different manifestations are most likely due to the different genetic make up and stages of health of each individual at the time of the attack.
To this day it has not been proven that this is not Lyme and or some of the many co-infections that likely set the stage for an opportunistic Candida overgrowth issue also.
Cortland, I suggest a look at a Dr. Ty Vincent in Hawaii who now practices LDI low dose immune therapy which is “targeted” at an individual pathogen(s) to stop the immune attack “selectively”, not like Prednisone that shuts down way to much. This is interesting to us. RP
Do you have a link?
Regarding Dr. Ty Vincent……..I heard an interview with him on Dr. Dennis J Courtney’s radio show. Fortunately his programs are archived.
The web site is http://www.dennisjcourtney.com to right on the home page is a block labeled “am impact archives” click there to the show menu. Click on the Feb 13 2015 show with Dr Ty Vincent.
It’s an hour long show and the better part is the latter half.
I found it most interesting. RP
Cort, if you would like more specific info on practitioners, please email me direct. Thanks RP
I am applying to try this protocol of LDI.
I’ll be the guinea pig and see how it goes and let you know. RP
Richard, how did you do? I start LDI with Dr Vincent any day now. My antigens are on their way.
“the underlying genetic make up”. I totally agree, but the theory of a mythical virus? waht about mercury, chemicals, molds, stress and other critters/poinsons. I believe in different triggers and an underlying genetic make up that makes some ppl vulnerable and others not.
Thanks Cort for this article and interview. Congratulations Dan on recovering your health, and thanks for sharing what you did to accomplish that. I can’t help but think your history of fitness helped significantly once you made the necessary changes to improve your health.
Anne, I’m sorry to hear you felt a bit slighted by the article. I myself didn’t feel there was a tone of one size fits all. I do think that any efforts we make to pace ourselves and reduce stress on our immune system, the more likely we’ll experience some degree of success. For some success means recovering our health, for others, it’s not getting worse, or even deteriorating less rapidly. A very wide spectrum indeed.
I don’t thing it was so much my previous level of fitness since I gained nearly 30 pounds and lost all muscle tone in the first few years of my illness.
The bigger factor in my opinion was simply that I proceeded to help my body heal itself with full intent and determination . . . and I have stayed with it.
I didn’t worry about money as my income dwindled nor worry about being alone when my wife left me. I just kept working with what I did have . . . full intent and determination to do all that I could to help my body heal itself.
As God would have it . . . it does seem to be working.
I also have succeeded with determination, frustration, the even more determined support (emotional, practical,ideas, money) of my husband and children. When in the acute phase, three years long, I did, however, take breaks from getting better, usually over a weekend. Without these I think I would have not coped, the person I thought I was so different from the person I actually am when sick. I also used pacing very effectively with exercise, and when I could run for half an hour without any negative effects I declared myself better! I tried so many different things, eliminated those that weren’t any good, read a lot of ideas… my belief is that everyone has a different solution, things I used that worked that I see have helped a lot of people: keep a detailed diary, what you eat, what you do, stresses, how you feel I had a code to dpkeep it quick, coffee is c, d is depressed etc. This helped me find out that: toxin in environment meant two to three days in bed; certain food same effect; emotional stress major set back; sleep disturbance minor effect; exercise great if monitored and increased very slowly. I started with walking slowly for one minute, increased by a minute a week, sometimes took it back down. Diet: whole foods only, no dairy, gluten, caffeine. Blood type diet helped for a bit. Acupuncture relieved pain sometimes, not reliable. Getting heart rate up was only thing that took pain away, for about 20 minutes. That was about ten years ago. So, seven years ago I was better. Have never been free of pain though. Now I seem to be descending into it again, after six years of eating what I like, doing what I like. So it seems I am about to re-enter CFS boot camp! But I know I can do it, and I have the support to do it… even if this time the solution is different, I am determined!
Thanks Bx – good luck on getting through CFS Boot Camp again 🙂
bx and others may be interested in this posting on Dr. Sarah Myhill’s ME website. In it one of her academic students posits the way our abrupt falling into and out of CFS/ME seems to work. Those of us who have seemingly improved enough to be fatigue and symptom free, only to have been struck down again may find it useful. My improvement was flat-rest pacing and nutritional via making my own live yoghurt for pro-biotic assistance.
Alas, my relapse trigger seem to have been viral.
http://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS
BX—–Why ,if you were doing better with your diet and exercise would you go to eating what you want and then take a chance on getting sick again??
The other was working.
Don’t get it.!!!
Carole
Wayne,
Wondered if it’s possible to send you a personal email.
Cory
Feel free to give my email address to the person requesting it.
Hi Cory,
I post frequently on the Phoenix Rising message board using the username “Wayne”. I would very much welcome hearing from you if you would like to PM me over there.
http://forums.phoenixrising.me/index.php?find-new/22614477/posts.
Best, Wayne
Recovering seems to imply that we can cure ourselves with excercise and yoga which gives the skeptics more ammunition to believe it’s all in our heads. What about the studies that contradict? I have had this since 1989 and have tried everything from exercise and yoga to near bankruptcy trying to cure myself. Until I accepted that I can’t cure myself my life has been much easier to live.
Everyone needs to focus on just accepting and carrying on and stop looking for that miracle cure until something scientific comes along. That’s what works for me.
You can probably never CURE yourself. You don’t cure yourself of Cancer either.
However, I came down with Mono, CMV and EBV and at the same time was exposed to Pesticides. Fortunately at the time I was an Athlete knew the value of exercise in some movement, as I taught YOGA.
I also at that time had a wonderful Infectious Disease Dr. that was on the Cusp of working with Aids patients and knew what tests to run and what worked for them. He put me on Immune Globulin shots and vitamins, did not restrict my diet but also put me on B-12 shots. Within 3 weeks I started getting better. Not well, but better.
As long as I got my shots I went back to work part time. Continued my exercise
Yoga and walking. I would say I was in remission until my Dr. quit treating CFS/ME pt. Also they quit making my Immune Globulin and went to Generic. It never worked
for me.
Have had many trials and problems with many Dr. in the Atlanta area.
Have never had one that is up on the CFS/ME problems. I live 30 min form the CDC?????
As I got older the stress seems to bother me more and take me down.
I know one truth- You are never going to get well if you don’t exercise or move. I spread mine out in segments during the day. 3-4 10 min Yoga or stretching.
Also I do it in the middle of the night just to increase the blood flow in my legs.
NEVER GIVE UP-AND NEVER DEPEND ON SOMEONE ELSE TO SOLVE YOUR HEALTH PROBLEMS-NOT GOING TO HAPPEN.LEARN ALL YOU CAN ABOUT YOUR ILLNESS .
THE TRAGEDY WITH OUR ILLNESS IS NOT ENOUGH DRS TO TREAT IT . DON’T GET THAT -WHAT COULD MATTER MORE THAT HELPING THIS MANY SICK PEOPLE-AND FINDING OUT WHY THEY ARE ILL?????
ALSO WOULD LIKE TO SEE A BLOG ABOUT PEOPLE WHO DO NOT HAVE SUPPORT FROM FAMILY_ I REALIZE THIS IS TOUCHY-BUT IT MATTERS MORE THAN ANYTHING!!!!!
THANK YOU CORT-YOU MATTER TOO!!!!!
CAROLE
I can’t speak about Dr Kilmas protocol directly. But people would understand why pacing works if you look at the science. This routine is based on determining the anarobic vs aerobic threshold of the body. At a certain level the body changes energy uses. This may have something to do with mitrocondrial cells. But the testing helps determine how each persons body functions and at what point in exercise the function changes. When it starts to shift into a different level that starts to over tax the body and energy stores that’s where the rest and pacing comes in. If the heart rate goes above a certain level with any movement – then the person is to slow down and rest. It’s a gradual building up. You don’t push through to tear down to have to build back up. You stop before you reach that level. I have a friend who is doing this and swears by it. I’m sure some that have done the program can explain it better than me. But there is science behind it. So nice to hear sucess stories. I feel it’s important to keep moving. It helps our bodies to detox, helps mood, improves blood flow and frankly keeps us alive and our brains more sharp. There are some who are extremely sick and telling them to move is an overwhelming suggestion. But this can be movement of only a few minutes if that is all you can do. It can be done lying in bed or sitting in a chair. The key is to move. I learned the hard way what happens when you get stuck immobile. I was in a wheelchair for 6 months and in that length of time my fatigue, strength and POTS got so much worse. I do believe when we sit down and stop, we start to deteriorate and die. I’ve watched this happen with some older people. I experienced it and had a hard time getting my strength back to my former level. I thought it would never happen. But being steady and determined does make a difference.
I agree with Cort, there are a few who stick around to try to help others. Hey, they are better. They practically have their life back. They no longer have to research, dig for answers or associate with those who have not discovered the path to their reversal of unwellness. But they choose to try to tell you what has worked for them with the hope it will work for you too. They are putting themselves out there for you to benefit. They could just disappear and forget others to their own struggles. They have a life now. Yet choose to try to help others. A sucess story is all in the definition that the person themself determines. I feel I’m a sucess story – but I’m not 100%. If I ask my husband what percentage he would say my recovery and dysfunction is – he says I’m still on a lower level than what I feel is true for me. I know where I’ve been and know where I am. So I feel my improvement is a lot higher than someone who observes me may. It’s all a perception based on our own understandings and how WE SEE THINGS. It’s based on LIFE in OUR world. Not life in someone else’s world. If we perceive ourselves as better and our minds accept that as a fact for us – then we can be more at peace with where we are in our own world, our life and our perception of what is true for us.
FYI, becoming a vegan has been a turning point in my health too.
Issie
It’s too bad, that in the first place society views people who have quieter natures, as damaged; that we somehow don’t fit into this modern world. I was born sensitive; something I had no control over and something I am not ashamed of. I am a gifted artist, a mother, a nurturer, a caregiver. I was not born to be a thrill seeker, but that doesn’t make me “weak”. My inborn, genetically sensitive predisposition also provided me with a very “strong” immune system; one that was always on high alert, an immune system that protected me from viruses, bacterias and cancers (illnesses caused by a less that optimal immune system). However, unfortunately, that same “strong” immune system is directly responsible for the development of my ME/CFS. No amount of yoga or exercise will cure my autoimmune/neuroimmune illness (ME/CFS), anymore than it would cure lupus, rheumatoid arthritis or MS. When I read stories of recovery, like this one, it is so very obvious, that we are not all suffering from the same illness.
Hooray for Dan!
Having followed him nearly every step of the way, I again applaud his very focused discipline in working towards his improvement and near complete cure.
But he has not done just this, he has shared, through his illness and improvement, wonderful videos information and a website that is second to none in sharing scientific information with the layman. It is certainly one I subscribe to along with Health Rising and Phoenix Rising.
Dan’s yoga videos made specifically for people with CFS/ME are first rate, and well worth watching. I think I own them all.
These plus the scientific information the the Last Best Cure book certainly reinforced and supported the mind-body work that I find so helpful.
Dan’s usage of, and sharing Nancy Klimas’ VO2 program was enlightening, encouraging me to avoid deconditioning by the slow and careful use of his own body’s evidence to guide him to improvement..
Should a VO2 programme not be available, the next best thing is the heart rate calculation found here on Bruce Campbell’s course. http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope This calculation is endorsed by Dr. Lapp of the Hunter Hopkins clinic. As Dan, Bruce and Chuck Lapp say Pacing is everything. My heart rate monitor certainly taught me to hear what my body is saying, to the point where I don’t have to use it all the time.
Bruce Campbell is another recovered patient whose online classes are helping many people. http://www.cfidsselfhelp.org Cort I know you have interviewed Bruce Campbell on Phoenix Rising. Might you do it again for Health Rising?
Bruce’s own story is at http://www.recoveryfromcfs.org
Thanks Cort for your wonderful articles which have certainly been instrumental in my journey back towards health. I’m certainly going to rethink my vegetarian diet and see if I can involve more vegan practices.
Suella
Suella –
Once I started on a vegan diet my body felt so much better and functioned so much better than before. I can’t quantify how large a step towards wellness it has made, but it has helped.
Dan- Your story is inspiring. I agree with the diet and the exercise.
As I said in an earlier post, NEVER give up. Also NEVER depend on
someone else to tell you how to do it.
GREAT POST!!!!!
Carole
This article is very likely why those with ME want to be considered distinct from those with CFS. Having dealt with ME/CFS for 25 years and having experienced a near recovery through careful management only to relapse and never rebound despite pacing and doing meditation, careful dieting, yoga and walking, I am angry to see yet another story of “recovery” on your blog, Cort. Not only that, but a literal endorsement of Graded Exercise Therapy under the guise of “pacing”(!) You do much good in your work but I can’t support you in presenting these miracle stories of recovery in this way. Firstly, we don’t know what these people recovered from and secondly, we don’t know how long that recovery may last. It must be made crystal clear that these examples may or may not be possible for others and that “recovery” may not be long term. These sorts of stories are why I don’t get treated seriously when I go see my doctor, despite the fact that my condition continues to deteriorate. I urge you to use extreme care in presenting these cases – while the upside of sharing might help some it can be terribly detrimental for the rest of us.
Some good points here. I think there are variants of this illness, in fact probably two key variants which one could label ‘ME’ and ‘CFS’.
I see the former as more severe – more bed bound, more neuromuscular etc.
I see the latter as still debilitating, but not as “extreme”.
I was the latter. Lots of fatigue, lack of energy, depression, gastro. Needing naps but not bed bound 12 hours plus per day.
I would hope ‘ME’ sufferers do not belittle this – hitting me at age 18, it destroyed at least 4 years of my youth. It still deeply pains me. I feel ‘lucky’ that I managed to recover 90% of my health, but still….
I think generally ‘CFS’ sufferers do recover better than ‘ME’ sufferers.
Are these 2 different illnesses or variations on a spectrum? I think probably the latter. But maybe not!
This illness is so hazy, and maybe that’s why it’s a ‘syndrome’. By CDC definition I don’t have CFS anymore, even though I need to pace myself to get through days and struggle with anything more than mild exercise.
Hi Matthias,
Can you tell me what you did to improve your health. No ill health should be ‘belittled’. My daughter got sick on her 13th birthday, now she is 19 and has been robbed of her teen years with no end in sight. She is ‘semi functional’ but it would be lovely to have a day, or even two, where she did not hang her head and say how tired she is. No social life. No exercise. So sad.
Linda
Hi Linda
This is my take on recovery:
1. Time. First 4 years I was awful. Then started to get better. By year 6-7 I was about 80%, by year 8 90%
2. I used lots of immune boosting supplements early in my illness and I think these made me worse and prolonged the bad early years of my illness. I think pulling back from those assisted my recovery. Has your daughter used any?
3. I had some good-ish results with anti-inflammatory and adaptogenic herbs.
4. And wait for it…antidepressants. I can hear the roars. For me, antidepressants have probably been the single biggest factor in recovery, along with time. Research has shown that some antidepressants have anti-inflammatory properties. I believe they helped my CFS in that way as well as treating depression.
But this is just my story.
Forgot to mention in my first recovery -the Dr. put me on low , tiny dose of Tofrinel (antidepressant). All of it together worked wonderful. I mean 1/4 of a small tablet .
Carole
Maybe that is true, I don’t know anything anymore! Maybe CFS is different or maybe less extreme? I started working to recover within a month of being I’ll, maybe that accounts for the relatively short duration, and less severe symptoms? I couldn’t get out of bed three times, but functioned under some kind of brain fog for at least three years, pain never has left me, was in bed, but could get up, a asleep for about four days of each week, sometimes five or six. I remember sleeping for a week once. This is for about a year. Then I improved in waves, building on the last improvement…
The upside is that some people will probably try Dan’s approach and benefit. The downside is that someone will try to fit you or other people into Dan’s shoes -who don’t fit. If you think about it, though, everywhere you go and everywhere you’ve gone people have tried to fit you into someone’s else shoes, though – whether they think you have viral or endocrine or gut problems…and apparently, since you’re still ill – it hasn’t fit.
We’re going to have stories on here from people who fixed their ME/CFS with diet – and people will say – just change your diet! There’s a story on the Forums for someone for whom it was thyroid. Another person for whom it was sinus surgery. There are several antiviral success stories. We’ll surely have Pridgen protocol success stories on there, I’m sure we’ll have Synergy success stories – and then people will say – just take your vitamins and you’ll be well!
Unless we’re not going to tell people about how people recover – which we’re not going to do – there’s just no around the mess..It’s a messy situation. All I can do is emphasize that there are many ways that people have recovered.
No matter what I think every needs to agree that eating well, getting plenty of rest and exercise is helpful. Do what you can is a key. Maybe the word cure is to strong, although I’m not sure if Dan used that exact word. Yoga dose help in getting the “jiberish” out of your head which is relaxing. Hatha yoga is more meditation than exercise. I know exactly what he was saying and I agree.
I cannot phantom why you guys find these recovery stories thrilling!? The majority of us have tried EVERYTHING from diets, to pacing/yoga/meditation, to supplements, to heavy medical treatments – to no avail. It’s nothing but depressing to read these stories, and I usually don’t. If ME/CFS/SEID was a cure-it-yourself type of illness, why are so many still sick??
I don’t think ME/CFS is one thing or the other. I think there are different kinds of ME/CFS and if you’re lucky and you find the right thing that fits you – that’s great. For most people, including yourself, the right fit, unfortunately, has not been found.
The stories we have are from the people who have found it. There are still a bunch of things – from lack of money to availability – I have not tried.
I do understand the frustration/anger expressed by many about people who are “cured” or close to. From my experience in the early years I had relapses followed by almost total remissions especially in the summer months. Not knowing what I had I did not pace myself those early years but continued to work and exercise. I crashed in 1999 then improved, crashed again in early 2001. Now I’m mostly housebound.
For the past ten years, I have used pacing as well as GET, meditation, Qi Gong, strict diet etc. Everything under the sun. But I am not better, I am slowly getting worse and worse as the years go by.
I am extremely happy for people like Dan, we should rejoice because somewhere along his disease something clicked, something changed to enable his body to recover. Find that key so in the future we may all recover.
I agree with all that you are saying and thinking.
Thought I would relay what just happened to a friend of mine that has 2 small children to support and is trying to work. She works in the health field.
She was diagnosed with Fibromyalgia by a Rheumatologist after being in pain for 3 years with PC Dr. Then they diagnosed her with a form of Rheumatica that is relentless in its pain-she cannot take any of the medications and now is on a shot
a week of a drug that cost $900.00 a month. Is helping.
Just spoke to her yesterday and she has been diagnosed with MS.
Found out also she sometimes has a problem finding her way to work as can’t remember directions. She has been working in the same location for 10 years.
I think all of the things we have could lead to any diagnosis and may be a preliminary of things to come. Maybe good maybe bad.
That is why eating right, exercise mild or whatever we can tolerate and rest can only help us.
I hope my friend finds another Dr. she is 42 years old.
Carole
PM,
CFS is a syndrome of unknown cause. It’s an umbrella. The different experiences may be different illnesses, or the same illness at different points in the spectrum. I favour the latter.
Under both scenarios, different people will have different capacities to recover.
PM and others – I’d be interested in what treatments you used / are using. From what I’ve experienced, seen or heard, immune boosting treatments can do more harm than good. They certainly set me back. Once I focussed on some basics – basic supplements, mind/body stuff, good diet – along with the passing of time, I got better.
I like to read recovery stories as there may be something in them to help me but the only help in this is the emphasis on heart rate. When I was most ill I could barely stand up without my heart rate going through the roof. So it may help doctors see that any form of activity has to be very limited for some of us.
I started to improve when I tried probiotics and vitamin D. Until then no matter of pacing helped. I notice this man gave up smoking, I’ve never smoked and I eat what is generally considered a good diet and I’m still not well, although a lot better than I was. His diet changes would probably decrease his histamine levels, to pick up an earlier article. Very interested in that. In my eperience activity follows feeling better, it doesn’t cause it.
Probiotics are of particular use to me. When I started making my own soya yoghurt I did feel much better. I’m guessing that there was something in my gut that needed re-balancing. I made this with organic long-life soya milk and a commercial starter.
This is something that I try to take daily in a smoothie or desert. For those of you who have dairy then organic milk and a natural yoghurt will be a starter for you. If using long-life milk, the high temperature part of the normal recipe isn’t necessary as heating as the long life process will have eliminated any problems already.
As I improve I can stand still for much longer. For me pulse rate and pacing, with short flat rests when I feel my body asks for them as well as an hour’s bed rest daily seems to allow me to live a life appropriate to my age. I’m not cured, but certainly on my way to further improvement.
Have to say this. I do not see why anyone needs to ck their heart rate. You can get a Blood Pressure machine and do it or just count on your pulse and look at a watch. You know when you have overdone -before you do it.
Just stop-when you feel your heart racing!!!
Carole
I wonder if he had tachycardia, or POTS. If so, you can not stay under your hartrate to pace like Klimas said.
Surprisingly, my friend who is doing this has POTS. It’s not the only thing she does. It hasn’t “cured” her. But, she says it has increased her stamina. She was a yoga instructor before she got so sick. She pushed herself to continue exercise and pushed herself to walk with increased time. She only got sicker doing this. When she started wearing a heart rate mointor daily, paying close attention to stopping what she was doing if her heart rate went too high and doing incremental exercise – she got better.
Issie
That’s pretty convincing…..
I should definitely get at some point and follow my own advice (lol)
I have had neither.
Hi Cort and M.E. people,
I got rather hopeful reading this article, and clicked on the link about Dr David Smith as I live in the UK, wondering whether this was something that I could start doing for myself. Unfortunately, the more I read of Dr. Smith’s paper, the more the alarm bells were ringing. Some of the things that concern me are:
– his insistence that the M.E. Association in the UK are only concerned with finding a virus responsible for M.E. (not my experience, as a member of the association)
– his statement that he is only concerned with “evidence based medicine” when he then goes on to make claims about the personalities of people with people with M.E.- for instance that they are anxiety prone, worriers, perfectionists, type A personalities (type A and type B personality theory itself has been discreditied !)
-his claim that “in his experience” which he then goes on to present as if it is fact- people with M.E had before developing M.E. experienced an extended period of stress
-his sexist claim that “women are born worriers” which he uses to explain why more women than men have M.E.
and so on
As, like most of you reading this, I have a limited amount of energy, I don’t intend to work my way through all 103 pages of the paper. I DO think that there must be value in rigorous pacing and would be very interested in seeing this developed as a programme by a more reputable clinician than Dr Smith.
Incidentally on my rather brief examination of his website I was unable to see anything written later than 2012 but I may have missed something.
I would be interested to see what you make of it, Cort.
Best wishes and good health to all
Petronella
Ha. I have read little on his site. I had no idea that he made those claims…What a shame. I was directed to his site by several recovery stories.
I think he is either on the cusp of retirement or has retired…
I think Dr. Klimas advocates a similar program, really – but based on your heart rate. Doing just enough – but not over doing. Most people do too much. The program requires for most people that they ramp back, I believe, and then proceed in very small steps.
When Dan was very ill the “exercise” he was doing was very mild and extremely limited – people outside the ME/CFS and FM communities wouldn’t call it exercise at all.
Dan,
What a great share showing from your story~ I too feel like a poster child nearly fully restored with some minor residual effects from having this disease since 1987! My crash came just as you spoke to a near comatose state when I was fortunate to have a husband with the where with all to take me to a large teaching hospital in Albany, NY to try to recover his wife as he knew me. Those were his exact words, this is not my wife, she feels like she is dying and I believed and so did he that my body was shutting down~ fortunately for me the team of Dr.s took this very serious and at the same time we had a nurse who dug her heels in to save my life. She researched and put the Dr.’s at Albany Medical in touch with Dr. Komoroff at Brigham Women’s Hospital in Boston who was the pioneer of the this time on this illness known on CFS at that time. He gave very specific instructions with 2 very specific medications which just so happened to be anti-depressants when put together he explained that if she has this illness you will see a difference. Thus began my healing journey but little did I know what would be a long and difficult process of nearly 5 years of my life for testing, doctors and until I reached an infectious disease specialist who just so happened to work at the CDC on the Swine Flu Vaccine that had been mandated we as American all have at that time did we begin to put this all together. With his help and many antibiotics over many years and the medicines prescribed by Dr.K in Boston and the help of my completely supportive GP who was willing and able to work his way along the path of learning right along with me and all my other Dr.s what this new disease is all about. Without them and the support of my family I would not be alive today. I am fully retired now at age 64 enjoying life and walk and ride my bicycle everyday that I can. BUT I too still must pace myself and if under too my STRESS can still crash to this day. So pacing you mention this many years later is critical as well as diet and exercise it all plays a role into remission and that is what I call it. I don’t believe it ever leaves us but I do believe we now have control over our lives and learning from some of us that have made it to the other side gives hope. Since the study done by IOM I am participating in every way I can to promote this and the answers they have concluded with as their findings hit many nails on the head dead center as far as I’m concerned. Their may be some who don’t agree but if that is the case then I would say they’ve never walked in our shoes~ I wish you continued good health and I stand committed to help all you suffer with this horrendous illness~ AND FINALLY IT’S NOT ALL IN OUR HEAD~ Have a wonderful Monday and a Blessed week ahead~ Adrienne
Thanks for the share Adrienne – and congratulations on your significant recovery. I urge you to put your story in the Recovery/Recovering stories section the Health Rising Forums. You don’t need to be completely recovered to have your story in there. You can find them here.
Cort, for some reason I can’t seem to work the page to post my story as suggested, can you help me with this as I do feel with my near remission at this state of life it will give hope and much information, thanks. If you can post it I’ve copied and pasted if that helps. Thanks so much.
What a great share showing from your story~ I too feel like a poster child nearly fully restored with some minor residual effects from having this disease since 1987! My crash came just as you spoke to a near comatose state when I was fortunate to have a husband with the where with all to take me to a large teaching hospital in Albany, NY to try to recover his wife as he knew me. Those were his exact words, this is not my wife, she feels like she is dying and I believed and so did he that my body was shutting down~ fortunately for me the team of Dr.s took this very serious and at the same time we had a nurse who dug her heels in to save my life. She researched and put the Dr.’s at Albany Medical in touch with Dr. Komoroff at Brigham Women’s Hospital in Boston who was the pioneer of the this time on this illness known on CFS at that time. He gave very specific instructions with 2 very specific medications which just so happened to be anti-depressants when put together he explained that if she has this illness you will see a difference. Thus began my healing journey but little did I know what would be a long and difficult process of nearly 5 years of my life for testing, doctors and until I reached an infectious disease specialist who just so happened to work at the CDC on the Swine Flu Vaccine that had been mandated we as American all have at that time did we begin to put this all together. With his help and many antibiotics over many years and the medicines prescribed by Dr.K in Boston and the help of my completely supportive GP who was willing and able to work his way along the path of learning right along with me and all my other Dr.s what this new disease is all about. Without them and the support of my family I would not be alive today. I am fully retired now at age 64 enjoying life and walk and ride my bicycle everyday that I can. BUT I too still must pace myself and if under too my STRESS can still crash to this day. So pacing you mention this many years later is critical as well as diet and exercise it all plays a role into remission and that is what I call it. I don’t believe it ever leaves us but I do believe we now have control over our lives and learning from some of us that have made it to the other side gives hope. Since the study done by IOM I am participating in every way I can to promote this and the answers they have concluded with as their findings hit many nails on the head dead center as far as I’m concerned. Their may be some who don’t agree but if that is the case then I would say they’ve never walked in our shoes~ I wish you continued good health and I stand committed to help all you suffer with this horrendous illness~ AND FINALLY IT’S NOT ALL IN OUR HEAD~ Have a wonderful Monday and a Blessed week ahead~
Adrienne
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Adrienne –
Thank you for sharing your story. No, it is not in our head.
This is an all too real disease but our individual well being lies in the unison and balance of our mind, body and spirit regardless of our physical limitations.
I have had CFS for 12 years now. I too have tried nearly every treatment. I see a well known Dr. In NYC and got diagnosed one month after I became sick. Even with an early diagnosis and all types of treatments, I still am not well. I eat well, pace myself etc.. Many times I have tried yoga but I suffer from terrible dizziness so I am not able to do yoga at all. Even just looking up or down or side to side triggers vertigo and dizziness. Anyone else out there have the same “dizzy” issues with CFS? Are you able to practice yoga?
I assume that you’ve been checked for POTS? I wonder if you have something that’s similar to Laura Hillenbrand? She has horrible vertigo but has found something that helped (not fixed it – but helped). I don’t know what it is though.
Barbara, I too suffer bad dizzy/vertigo spells that I know to be a Candida problem that goes from the gut to the sinus’ and back and forth thru the blood stream. If I attack the fungi in the sinus with say colloidal silver, the next day the stomach inflammation exacerbates and visa versa if I take an antifungal for the stomach, the sinus flair as a Herx reaction. That’s why the Dr Ty Vincent protocol of LDI looks so interesting right now. RP
Hi Richard and Martha and Cort! Thanks so much for taking the time to write back to me, I know with our “swimmy heads” (Martha, I love that phrase!) I do appreciate your responses. I never heard of Dr. Ty Vincent. I will google his protocol and take a look.
Martha, Yes I have heard of the Epley maneuver, I once had an ENT try that on me and it only made me feel dizzier.
I will certainly look in to your suggestions, I always stay hopeful and like to try new protocols.
I will definitely look in to the Trigger Therapy Work Book, looks very interesting.
I often get vertigo when I am lying in bed and then change positions from one side to the other. I call it my “head rushes” They last for a few seconds and then settle down. Forget about watching a train go by at the crossing gate. I always have to look down and away from the moving train.
I did try LDN many years ago and I found that it never quite helped me. I am very sensitive to medications and usually for me less is more. Even taking supplements and vitamins are a challenge.
I hope you are feeling better and thank you again for taking the time to respond!
Hi Barbara,
Well, it sounds like you’ve done plenty of experimenting of your own! Sorry to hear that you haven’t found relief yet. I know exactly the phenomenon that you describe about turning over in bed. In fact, in the first years, I was so sensitive to my own movement that even just moving a leg would be followed by several minutes of resonate shocks, like those on a richter scale. I also know what you mean about the train. I got sick in college, and I was suddenly unable to look up at the slide on the wall, and then back down at my notes. Just that much back and forth movement was too much to process, and somehow the discomfort “forced” me to look down, and/or close my eyes.
(Have you heard the episode of the Radiolab podcast called “Gravitational Anarchy”? It includes a reading of an essay about a woman with vertigo. When I heard it, it was like the first time I had ever heard myself described. Quite descriptive, quite creepy, and quite accurate.)
Early on I had a neurologist tell me that even once your body manages to resolve the triggering event (in my case, probably a virus) that initially caused such dysfunction, that your brain has, in the meantime, had to find so many compensatory methods to cope with the incoming aberrant signals (from your inner ear, muscles, or whatever….another part of your brain?), that for a while, until the system has fully “re-set” itself, the “vertigo” can actually be coming from that compensatory part of your brain (the part that had to adjust all its “knobs” to counteract the incoming signals). I have no idea if he was actually right, but that general concept has influenced my overall view of this condition in many ways. Often, when I find myself back at square one, I give myself the following pep talk:
Support your body in every way that you can to help it eradicate the bugs, heal the tissues, regulate the systems. And then, give your brain and nervous system the time, and anything else it appears to need, to calm down, re-wire, and re-set itself.
I think of this at a “two-pronged” approach: support the body, support the brain/nervous system.
I think the central problem – for most of us – lies in that first “prong”. But I am also grateful to have access to practices such as yoga, which seem to address the second half of that equation, and often better than much of modern (Western) medicine really can. In the same way that Qi Gong has been proven beneficial to people with Parkinson’s in helping them regain balance and stability (researchers believe that new, “healthier” neural circuits of communication are formed during such practice) I can see that same “family” of mind/body (or brain/body) practices to be potentially helpful for any condition that may have some aspect of “brain plasticity” playing into it.
The absolute bugger if this particular illness is that the symptoms can be so severe that they are only aggravated by any attempted treatment, even those as gentle as yoga. And that is extraordinarily frustrating and disheartening.
Well, all I can offer, again, is just blanket hope that it does get better for some of us, which implies that it can get better for many more of us too. Fingers crossed for all! And best of luck to you, in particular, Barbara. Martha
Hi Barbara,
I suffered from true vertigo, and also what I think of as a “swimmy head” for many years after first getting sick with “a virus”. These are extraordinarily debilitating symptoms, so I’m sorry to hear you have been suffering from them for so long. It is very hard to do almost anything when you are disoriented, even within the boundaries of your own body. I was told that the cause of my own vertigo was most likely viral-induced inner ear damage. But I think just as likely it could have been more on the neurological side.
Have you heard of the “Epley maneuver”?
A doctor here in Portland, OR discovered that with a specific series of positional changes made to his patients’ heads, he could move the crystals in the inner ear fluid that cause many cases of unremitting vertigo into a position within the canal where they can no longer cause trouble with spacial orientation. Specifically, it is used to treat “benign paroxysmal positional vertigo”. I never knew about his perspective/technique until my vertigo had pretty much subsided. Mine, fortunately, eased with time, and by paying rigorous attention to all other (seemingly unconnected) parts of my person/condition. But something about your description – about being so directly affected by the movement of your head – made me think again of Dr. Epley’s approach/perspective. (Which is now quite well accepted as I understand it – not “fringe” medicine at all, anymore…..though, he was ridiculed in the beginning.)
Also/Alternatively, are you aware of the role that active trigger points in your muscles can play in the formation of many systemic symptoms, such as vertigo? The sternocleidomastoid muscles, in particular, are highly implicated in vertigo and dizziness. Page 53 of “The Trigger Point Therapy Workbook” (by Clair Davies) is dedicated to balance problems associated with active trigger points in those muscles (which run from the top of your sternum and clavicle, to the mastoid process – the bony knob behind each ear). From that book:
“Another unusual trait of trigger points in the clavicular branch is that they are apt to make you dizzy, nauseous, and prone to lurching or falling. Fainting may occur unexpectedly. This dizziness can last for minutes, hours, or days. Often given a diagnosis of vertigo or Meniere’s disease, it can become a lifelong recurrent condition, defying all treatments and medical explanations.
The myofascial explanation is that differences in tension in the clavicular branch of the sternocleidomastoid muscles help with your special orientation, keeping track of the position of your head. When aberrant tensions in the muscle are cause by trigger points, confusing signals are sent to the brain…………”
So, you might want to check out that book, particularly if you also have any significant neck, shoulder, or head pain or stiffness, but maybe even in any case (as such trigger points can also cause referred pain, visual disturbances, and other “quieter” systemic problems).
I never found any direct treatments for my own vertigo, I just supported my sleep, digestion, nervous system, musculoskeletal system, etc., and thankfully, the true room-spinning, floor-dropping vertigo eventually went away completely. I still can get swimmy in the head when I am sick or over-extended, but with food, rest, really good hydration (I drink one gallon of water a day, with 1/2 tsp. Celtic sea salt added to each quart), that pretty dependably goes away now. Have you read up on, and explored treatments for POTS? I believe the altered blood flow of that condition was a major contributor to my own swimmy head (more subtle – or rather, less dramatic – than true vertigo, but still disabling), and maybe even the vertigo as well.
LDN has also been hugely beneficial for me. Some of my dizziness appears to have been migraine/headache/inflammation related. As soon as I started LDN, the chronic sinus/migraine headache that has been a constant of (my version) of this illness, was greatly relieved (along with the POTS). And both symptom complexes have continued to recede as I’ve slowly increased my dose. (Started at .5 mg, now up to 2.5 mg.) I am no longer completely congested and sneezing by the end of each day…. it’s really as though my entire immune system, in close conjunction with my cardiovascular system, has calmed WAY down. And no headache means no more dizziness. (That kind of dizziness, anyway.) Now I can walk much longer distances, work much harder physically without any pushback from my body…its really quite remarkable. (My vote for “main perpetuating factor” in my own case, is now autoimmunity, after my experience with LDN.)
I do quite a bit of yoga, and I love it. Every time I re-commit myself to practicing it everyday, I know that it is super important. But, for me, activity like that has turned out to be more the reward (and coping mechanism), than the cure.
For years I tried to let my body heal through the most natural rigorous means I could: immaculate diet, only a handful of carefully selected supplements, daily self massage, stretching, yoga routines, meditation, a daily walk (no matter how good I really felt about going), etc. So, by the time my current Naturopath was suggesting things like LDN I had become extremely resistant to any such “silver bullet” cures. I had become increasingly committed to the idea that I could (or should) get better through only good life style choices and unwavering self-discipline….because, not only were those the only tools that I had consistent access to, they were the only ones that had proven safe (unlike MANY of the medications, and other treatments, that I’d been given in early days, and along the way). It was hard, then, to admit when those “lifestyle” interventions were not proving to be enough. (I never approached walking in the way Dan did, though…so, there is always obviously another level of commitment that anything can be taken to. Way to go Dan, on your remarkable recovery!)
My point…just that as a fellow (ex) vertigo sufferer, it may still be possible to find your way back to stable ground (I got sick 14 years ago). I hope very much that you find some solutions of your own, and very soon. Best of luck! Martha
Great response, I totally forgotten about the crystals in the ear and yes that was a major factor for my vertigo to lessen as well. The movements and simple exercises in bed in the morning rising very slowly after with my knees bent and a slight rocking motion was what it took along with the neck movements was what it took. After weeks of doing that I automatically stopped jumping out of bed in the morning and used these techniques faithfully. Very good point to make. Thank you, Adrienne
Barb,
I truly understand the vertigo issue you are having, mine knocked me to the floor one time to the point I crawled to the phone and dialed 911 as I was standing in my kitchen at the time. Never having experienced anything like it I did not realize what had happened to me. I continued for a while with more incidents off and on for a couple of years, then I came down with yet another serious sinus infection, flu like symptoms etc. I went to a very knowledgeable ENT in Portland, Maine close to where I lived at the time and he said that I needed sinus surgery. He did the surgery and low and behold I’ve never had another bout with it. Now I have allergies which are seasonal as I was on shots for far too many years which was another issue that suggested brought on my CFS/SEID to begin with along with the Swine Flu injection I mentioned. Now I have a maintenance program and have had for years where I use water and salt mixture you can purchase at the drugstore along with the bottle to irrigate my sinus passages weekly. Used faithfully it has all but stopped me from serious allergies symptoms, no more sinus infections, ear aches and NO MORE VERTIGO since. That is what worked for me. To this day the surgery was the beginning to end the vertigo and without that and maintenance I do believe I could still be vulnerable to it. I do hope you find this response of some help. Good luck to and realize that the allergies and sinus and vertigo is only one small part of my 28 years with this illness. Helping one another with information that worked for us is our way of giving back for the help we received in prayer that it helps another person walking this path with us~
Have a blessed day, Adrienne
Cort
I AM SO HAPPY AND THRILLED FOR DAN’S RECOVERY. HE WAS A SUCCESSFUL MARKETING EXECUTIVE BEFORE THIS DISEASE JUST ABOUT KILLED HIM. NO DIFFERENT THAN SO MANY OF US – OTHER THAN DETAILS…
I KNOW DAN – HAVE SEEN HIM ALONG THE WAY SINCE 2006. AS I’M A PATIENT OF NANCY KLIMAS – .BELIEVE ME -MEDS/ PACING/YOGA/VO2 MAX.STUDY ARE ONLY SOME OF THE ARES HE STRUGGLED WITH.
EACH ONE OF US HAS DIFFERENT SYMPTOMS, BODY SENSITIVE REACTIONS TO MEDS, SUPPLEMENTS, FOODS, MOLDS, CHEMICALS, CIRCUMSTANCES.. AND THEY CAN CHANGE, OVER TIME – MEDS WORK (STOP WORKING), VEGAN/NON VEGAN – ROTATION FOODS, TOXINS, METAL AND MOLD EXPOSURE, FINANCES.- AGE..
I REMIND EVERYONE – HEALTH RISING IS NOT THE MEDICAL, LIFESTYLE, ENVIRONMENTAL, ONE SIZE FITS ALL – PLAIN ABC’S OF THIS AWFUL DISEASE – “DIAGNOSIS”( if diagnosed!!!) – AND THEN BOOM – RECOVERY – SUCCESS GUARANTEED……, OR IS THE NEW FORUM SITE.=.
FIRST- DON’T SHOOT THE MESSENGER-” CORT AND HEALTH RISING.”
CORT AND OTHERS HAVE DEVOTED YEARS TO BRING LOCAL, NATIONAL, INTERNATIONAL NEWS, THE GOOD,BAD, UGLY SOMETIMES WHEN IT WAS CONSIDERED WEIRD – WHEN…WHO ARE THESE DOCTORS IN AN UNKNOWN CLINIC W/A SMALL CLINICAL TRIAL USA OR EUROPE ?? ALSO ATTENDING AND TESTIFYING FOR US IN DC.AS A PATIENT ADVOCATE – AND MEETING WITH WHAT WE WERE HOPEFUL AND “ASSUMED” – WOULD MAKE A DIFFERENCE $$$$$$ INCLUDING THE GOV’T OFFICIALS (LOL) , PATIENTS, DOCS, CONFERENCES – HE AND MANY OTHERS DEVOTED YEARS!!! MANY PATIENTS STILL DO THAT CAN TRAVEL..TRY OR NOW CAN POSSIBLY SKYPE…
SECOND, I SUPPORT HEALTH RISING AND THE NEW FORUM- (ALL READERS CAN CHOOSE HEALTH RISING OR OTHERS RELATED….SITES.)……….. TO CONTINUE PRESENTING AND OFFERING THE BEST POSSIBLE INFORMATION AS YOU DEEM..-
.I’M GLAD YOU’VE GOT SOME RESOURCES…(BTW) ON BOTH SITES THAT FOR EXTRA INFO” OR APPTS SOME BLOGGERS/PROFESSIONALS WHO ARE EXCELLENT – ADDITIONAL $$ ARE REQUIRED….CORT – THIS IS A GOOD THING.PLEASE DON’T CHANGE THIS …WE CAN CHOOSE TO PURCHASE OR NOT!!
NO WHY’S OR WHEREFORE’S….I AM IN IT WITH EVERYONE!
Great story, thanks Dan & Cort–and Cort for his thoughtful replies to those who reacted with despair and anger.
As you say, CFS/ME and all the related illnesses (tickborne/mold/mcs) are heterogenous–they are probably overlapping, with variable causes; by putting stories out there, people have hope. The specifics may or may not apply to a given individual.
Cort and all..
As Jill said, Great story Dan..and Cort:
My sincere true apology to all – if my earlier strong comments created more despair and anger than we needed..for so many suffering from this awful disease.
Early in life, I had 6 years of “this” illness, then many years of 24/7 – active “recovery” – relapsed – ” recovery” etc…so again – thanks to all!!
Ellen
Dan says that Dr. Klimas asked him to restrict meat.
Does anybody know why she made that suggestion?
Due to our multiple food intolerances, I think that we already have a hard time taking in enough calories. Also, meat provides a lot of nutrients.
Is anybody else on this list a patient of Dr. Klimas’? Can they explain why the recommendation to restrict meat?
Thank you.
Jonathan
I know it came out that way but when I asked him about it he said it was not Dr. Klimas directly that he got that idea from. It had to do with the clinic but I don’t know what.
Nancy asked me to participate in a study she was doing at the University of Miami. One component of that study involved nutrition and I quickly saw that I was eating too much meat and cut my consumption to once a week. I certainly felt better as a result. Now, years later, I am a vegan and my body functions much, much better without meat.
I’ve been vegan for about two years now. Most of the doctors that are promoting this lifestyle feel that one reason it helps improve health is it helps the immune system “reset” ( not sure that’s the right word) but animal protein is much like our own flesh. With a faulty immune system, the body may have trouble distinguishing between the two as it tries to break it down in our body. It is metabolized and broken down differently. For me, I have/had Chronic Kidney Disease at stage 3. My kidneys could not break down that type of protein as overtaxed as they were. One of the first things the docs have you do is stop animal protein. Research showed me that with some autoimmune illness (MS for one) avoidance of dairy can help with a reversal of the Illness. More reason for a vegan lifestyle. My doctor also found that avoiding too many fats (oils that are not whole foods, are refined foods) and other heavy fat foods are also if help to the body. The main goal is to be low fat, whole food vegan. This has been one of my best helps. I have reversed my kidney disease to stage 1 from stage 3. And my health all around is greatly improved. I have many autoimmune disorders and all seem to be improving. So for me, stopping animal products was literally a matter of life or death. I truly believe I would be dead now had I not changed to this lifestyle.
Thank you for the reply Issie….very informative.
I see than Dan himslef has been replying to some of the comments.
Dan, if you could please explain to us why Dr. Kilmas has recommended meat restriction, I would be most greatful.
I look forward to your reply.
I have already replied to that issue, please refer to the other comments I have made.
There’s so much confusion about what ME/CFS actually is and who has it that I don’t get any satisfaction at all from these ‘recovery’ stories. It seems more likely to me that anyone who is going to get better would get better no matter what they do and those who aren’t, aren’t. Dan’s illness could well have been either a prolonged recovery period from some random occult infection or an autoimmune process that eventually burned itself out, but for the people who have been ill for decades and don’t get better no matter what they do it just doesn’t seem like the same illness.
John, I firmly believe we are dealing with an Autoimmune situation and greatly improving ones life style can improve the “modulation” of the over reacting immune system to a large degree, which then amounts to a significant overall health improvement.
If I achieved 80% improvement, I would be most happy also. RP
Yes Richard. And that’s where I think many CFS sufferers set themselves back, with immune stimulating supplements / drugs – adding fuel to the fire…
I think a lot of supplements add to the problem BUT I also believe certain supplements are very beneficial, such as fish oil , vitamin D3 and L Carnitine.
I’ve just been diagnosed with low level CFS/ME, and I’m still at work. My job is very ‘cognitive’: lots of meetings, clarifying problems and discussing solutions. I hear a lot about pacing, but I’m not sure if it includes cognitive activity, which for me (perhaps because I’ve already had to stop all other activity in order to keep working, and still my symptoms suggest it’s not enough) seems to be what makes me suffer the most. Any advice/info on this?
For me . . . pacing absolutely includes cognitive function. Brain activity can wear me out and lead to a crash.
The more stressful the brain activity, the quicker it leads to a physical collapse.
Stress, whether mental or physical, impacts the circulatory system and our circulatory systems are inflamed (see https://www.youtube.com/user/MECFSCommunity for an explanation by Dr. Kenneth Friedman).
Thank you Dan and thank you Cort.
I need a little direction Dan, Cort or any one. How does one determine a persons ideal base heart rate and the increased rate to stay under. I am buying a heart monitor.
Any information on managing the ideal rate window.
Also information on exercise, lines I’ve not found much, too general.
I have avoided all exercise for 12 years, before that I was able to exercise for maybe 2-3 weeks before having a significant crash. Now I must be very careful. I’m much more ill than I was during the 90’s.
Exercise is a frightening proposition for me now, instead of referring to it as
exercise I think I’ll speak of “increasing my activity level”.
david
David –
Go to: http://ME-CFSCommunity.com/group/theexercisegroup. You will find complete instructions and videos to assist you as well as many comments from member of the ME-CFSCommunity.
Correction. Go to http://cfsknowledgecenter.ning.com/group/theexercisegroup
I have one question for you Dan; did you also have tachycardia, breathing problems and POTS or panic attacs? I am happy for you that you are better.
None of the above.
Thank you for your good wishes.
David,
A simple method is found here. Dr. Lapp recommends that we use 60% of the recommended maximum pule rate. How to calculate that is here:
http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
Congratulations on getting a heart rate monitor. You will learn all sorts of areas where you will be surprised at what raises your heart rate too far. Sometimes it is a combination of stressors, and not just physical.
I find that I can slow my activity, stop, just stand or sit and my pulse rate will very quickly recover back to my personal level.
I have found that my breathing shows that I am over my limit so don’t have to use the pulse monitor so often now.
Well done for changing the language you use. Exercise is a very emotive and laden word. Activity is neutral in my book.
Dan’s site and information is extremely valuable and take the information on “exercise” much further than my simple calculation article. His site would always be my first go-to place.
Dan, Well done for persevering and being so disciplined in your life. It’s easy to give up trying to feel better. I’ve had tonic clonic seizures with the resulting ‘comatose’ period afterwards before cfs/me was considered. I have recently been part of a fatigue study in New Zealand with some interesting results for me personally. I now wear my heat rate monitor all the time and when I feel my muscles burn or feel weak I reduce my effort and for the last 4 months I’ve been feeling greatly improved. I get tired easily but am able to monitor something now so psychologically I feel in control. And being told there is definitely exercise intolerance with cognitive changes confirms what I always knew. No diagnosis from a Dr but the scientists say CFS. All the best for the future, take it slowly.
Congratulations Julia. Thanks for passing that on and good luck with the protocol 🙂
Julia –
The funny thing is . . . that I don’t feel like I’m so disciplined. After 63 years of often putting my body at risk it seems entirely appropriate to nurture it and allow it to heal itself the best it can.
The truth is, it takes so little effort and what effort is required is actually pretty interesting as I watch my body react.
Although, I am very happy for Dan and his remarkable recovery, I do not believe his condition is the result of up-regulated immunity. He doesn’t have POTS, or tachycardia. So, he does not have the same illness that I do, and that many of us share. I believe that today’s ME/CFS is actually yesterday’s neurasthenia, I do not believe that as stated in Cort’s article “that it could happen to anybody. That, ME/CFS and fibromyalgia are equal opportunity diseases – that they will take down the least of us and the most of us. That they will take down people in superb physical shape, the adventurers and successful, hard-charger entrepreneurs living the life.” I believe that you have to possess the genetic predispostion towards autoimmunity and that there are many triggers.
Neurologist, George Miller Beard (1880) once said, “The doctrine to be taught and strongly enforced is that many of these patients are not neurasthenic, and under hardly any conceivable circumstance could they become neurasthenic. They do not belong to the type out of which neurasthenia is born, either mentally or physically. Instead of rest and quiet which is needed by the true neurasthenic, they need mental and physical activity, less rather than more food, depletion rather than repletion.”
An estimated one-quarter of all patients seeing general practitioners complain of prolonged fatigue, a symptom common to many illnesses. Several studies indicate that only a small fraction of these patients actually have ME/CFS. Now, that our illness has so many defintions (the lastest addition SEID) and includes so many groups of people, I believe it has become even more difficult to identify those with ME/CFS.
I totally agree, I have the same symptoms as you. I also have POTS, Tachycardia and abnormal weight loss. Dan is -with all do respect- another subgroup. With my symptoms it is impossible to exercise. I did it and end up in a wheel chair and was bedbound for years! If you can recorver from ME/CFS with exercise and yoga, i don’t have ME/CFS or is it the other way around? We are talking about a different illness. I hope sone there will be objective markers for all subgroups so we can end this type of discussion. As long as we are talking about Chronic Fatique this will never end.
Sounds very interesting! Which heart rate monitor would you all recommend to buy? There are so many out there!
Timex makes an excellent heart rate monitor. I bought one several years ago for $30 or so from Amazon.com. It now sells for $40 (http://www.amazon.com/Timex-Unisex-Trainer-Mid-Size-Silver-Tone/dp/B00B4UVY1Y/ref=sr_1_2?ie=UTF8&qid=1427291988&sr=8-2&keywords=timex+heart+rate+monitor.
Thanks for the quick response, Dan. One more question… What’s the best site to learn how to monitor your heart beat w/CFS? and… where can I find videoes of the gentle yoga for CFS?
Thanks!!
The absolute best place to learn how to monitor your heart rate is by undergoing the VO2 Max testing through Dr Nancy Klimas’ office.
Alternatively, you will find videos and details as well as much discussion of the subject in the Exercise Group at http://ME-CFSCommunity.com.
A new series of yoga videos for those with physical challenges has recently been made available at http://YogaOnthePath.com. All profits from videos sold goes towards research on neuroimmune disorders.
Dan how low was your VO2MAX when you were tested by Klimas (CPET)? Did you also have gut problems, (food)allergies or a sore throat?
I no longer recall the point to which my metabolism changed from aerobic to anaerobic (VO2 Max) and cannot locate the chart I received from the testing. My resting heart rate is typically varies between 49 and 51 beats per minute and I seem to recall that my initial targeted maximum heart rate (which is below my VO2 Max) for my allotted two five minute periods of exercise every other day was 75 beats per minute.
Three months later I had worked myself up to two periods every other day in which my maximum heart rate was 88 beats per minute. It was at this point that I clearly realized that the limited exercise protocol was easing my symptoms.
I kept a daily log of my morning resting heart rate (RHB), hours of sleep, blood pressure, energy level (both morning and evening), average heart rate (both morning and evening), exercise, daily activities (both morning and evening), as well as my crashes and their duration and level of severity. I kept the daily log for nearly six months.
I am now so attuned to my body that I am aware of the slightest cognitive and/or physical stress which may be present and I act accordingly.
I have no gut problems other than those occasions when I eat something off my vegan diet.
Hi Gijs: My morning resting heart beat is frequently100 bpm. I can sometimes hear my heart beating in my head, while I am lying in bed. When you have tachycardia, it seems like you are always doing aerobics. I also have extreme fluctuations in my blood pressure. I hope, as you do, that soon there will be objective markers for all of us with ME/CFS. We definitely are not all experiencing the same illness.
I feel the same Rachel. It is importent to identify onjectieve subroups for all of us. I think that you and i have an autoimmune problem against receptors and vasculair issues, Best wishes!
I have Fibro, not CFS. But I have suffered from POTS and I think it is probably part of Fibro. I have approached the POTS in the same way as I have approached the paced exercise. Besides having greatly increased my threshold for physical exertion, I have increased my threshold for POTS in the positions in which I experienced it. I am confident of continued improvement, possibly to being clear. But this is a work in progress, I may hit a plateau.
I have done this by going into those POTS-triggering positions in as non-stressful a way as possible – in a hot spa pool. My muscles are warmed up, I do a range of stretches far more successfully than what I can do without my body being supported by water, including myofascia stretches, and I do a series of provocations of my POTS symptoms, eg by squatting, by doing quad stretches, by putting my arms and upper body into the POTS-triggering positions. Only with my weight supported by water and my whole muscular, myofascial and cardiovascular systems warmed up, I can endure more than I can otherwise. I do not force myself to tolerate the POTS symptoms for more than a few seconds, and quickly go into totally relaxing positions until I have recovered, before doing the next provocation.
But I have gradually come to tolerate more and more extreme positions for longer and longer. And some of my most frustrating debilitations have reduced. For example, as I have said before, I could leg-press 2.5 times my body weight yet I could not squat! I am slowly becoming able to squat for a few seconds. I could ride a bicycle reasonably fast for 2 hours yet climbing 2 flights of stairs had me breathless and my heart racing. This too is improving. And doing anything with my arms that involved holding them out straight for long, also had be breathless and heart pounding, eg painting or window cleaning – yet I could win arm wrestles against some quite strong young fellows. This frequently had me accused of being a malingerer – a strong guy wimping out of simple chores!
I have been doing muscle strengthening at a gym for 2 years, and early on all I did was give myself seriously sore muscles. The problem with exerting individual muscles I think is the same as over-exertion (going anaerobic) overall – the individual muscle ends up suffering post-over-exertion malaise. I only learned about pacing 1 year ago and have had my biggest improvement since then – and besides keeping aerobic with my walking, swimming, cycling etc, I have stuck to using small weights only on the muscle strengthening equipment and doing lots of repetitions with a large range of movement. This has been effective. But it takes a long time for previously damaged muscles to lose the residual pain – I still have some in my upper arms and pec muscles 1 year on.
I have also discovered some helpful ways to do release-type stretches of my knee area muscles which was where significant POTS symptoms were being triggered on squatting. I use a rolled-up blanket behind my knees as I squat, and this seems to produce a great release-type stretch, possibly of myofascia in the area. I also use the rolled-up blanket around my middle just above my legs, and lean my whole torso weight forwards onto my upper legs as I squat – this produces a similar release in the area where the leg muscles join my trunk. A rolled-up towel around my neck is also great to get better stretches of my neck muscles by rolling my head around on top of the towel. I have only progressed onto these tactics after months of the spa-pool tactics first. I did use waterproof objects in the spa to produce the same effects as I am describing with the rolled-up blanket. But I am now tolerating a lot more out on dry land, so to speak.
Maybe I too need to get into the video business! I am confident that what I have worked out for myself would be helpful for others too. And others may be able to use the general principles to work out other useful self-treatments too. I do use an excellent Qi Gong therapist who does some amazing stretches of my muscles and myofascia that I could never do myself. He is really pleased with the progress I am making, he can see the greatly increased mobility of limbs etc and long standing knotted muscles are slowly letting go and normalising on massage treatment after having been impossible to all masseurs for 20 years.
Dan!
I am so happy to hear you are doing well. You’ve been a huge help to me and my physical therapist who used your website and videos to teach herself how to help me.
Thank you for all you’ve done to show us all the specifics of how we might implement what you so successfully used to become more well. You give back so very much to us, and this article came at a perfect time for me.
After being pretty well for a couple of years, I forgot how to pace and am starting over with my exercise program and plans. Thank you for all you do to share the good news!
Be well,
Linda Carrington
Grand Rapids, MI
Thank you Linda.
It is truly an honor to be able to serve others around the world on their paths towards wellness through http://cfsKnowledgeCenter.com., http://ME-CFSCommunity.com and now http://YogaOnthePath.com to generate revenue for neuroimmune research.
This disease has been one of the great gifts of my life. It has led me on an inward journey of self discovery and growth far beyond anything I could previously imagined. That I have, in the process, regained some measure of my former physical abilities is frosting on the cake.
Well being IS within all our grasp. Complete physical recovery may not be, but well being most definitely is.
Well said. My own thinking has been coming around to that re my fibro. Among other things I have found out who aren’t really my real friends, and found others who are. I have much more acute perception of character, including of my own!
Many CFS-like symptoms can be caused by exposure to quinolone antibiotics. Nowadays much of the meat we buy contains these antibiotics. This might be a possible explanation why some patients improve when they eat vegan. I would be curious if Dan wants to be a guinea pig and try some antibiotic free meat.
I’m glad Dan got his life back.
But you cannot exercise, eat, yoga etc your way back to fitness.
If that’s the case then there are 2 options, either the diagnosis of ME is wrong or you had a spontaneous remission, which only happens in about 5 percent of cases
I got mononucleosis in 1969 and never completely got over it, just thought I always had the “flu”. I didn’t begin to figure things out until the outbreak at Incline Village that got publicity, Different things have helped me at different time in my life, depending on my symptoms severity. We are a complicated group doing the best with what we know. I know that if I eat sugar, it will come back to get me. My biggest problem has been with stress. Stress will knock me down faster than anything, and prolonged stress is the worst. I find that I need emotional support and to have hope. I have to separate myself from stress, or it becomes a slide into severe problems, including other illnesses that take advantage of the fact that I can’t fight them off because I am really down. So… get all the support you can, have hope, and run away from stress. And be nice to yourself, It’s hard to keep getting back up to fight again, but we continue to learn each time how to cope better and get more answers. God bless us all.