A real go-getter, Nathalie hiked, biked and even modeled prior to getting the flu from hell. She tried just about everything she could, and a three year course of Valcyte did help, but when she had to stop the Valcyte she was in real trouble. Reaching outside her usual channels, she enrolled in a course lead by Toby Morrison, a former ME/CFS sufferer, which emphasized pacing, good sleep hygiene, nutrition and consistent, very gentle “exercise”.
The program sounds much like the one described in a recent blog used by Staci Stevens and Todd Davenport (P.T.). Heart rate monitoring and short duration, low intensity exercises, interspersed with long rest periods, better sleep hygiene, etc. have not returned Nathalie – a highly active person prior to ME/CFS- to anywhere near health, but they have improved her functionality significantly. For the first time in years she has hope of a better, if still limited future.
Nathalie sounds very much like the patient described by Staci Stevens in a case report who, while still disabled, was able to improve her functioning significantly using a very gentle activity program. These programs have improved the health of some, and have even returned a few people to health.
Dan Moricoli is a good example of the later. Getting on a treadmill was all Dan needed to do to bring on myoclonic jerks, slurred speech and land him in bed for a week. Dan now believes, however, that Dr. Klimas’ and Connie Sol’s very gradual heart-rate based exercise program brought him to 75% of normal health, yoga got him 10% better, and meditation brought him the rest of the way. He’s now a vigorous 74 year old. Dan is now redoing his exercise and blood tests to see if his aerobic energy production system is back and if any traces of ME/CFS remain.
For me Nathalie’s story brings up the nagging question of how much improvement I’ve missed simply because of my lack of discipline involving pacing.
A Canadian Gal’s Story of Progress and Hope
My story starts in August of 2009. I had turned 40 that year and it truly was one of the best years of my life. I had a job I loved, working as a Medical Admin Assistant in a multidisciplinary clinic for a spine surgeon, and for the clinic itself. I was more active that year than I had ever been.
I had taken up fitness boot camps twice a week, did a couple of trips, played golf, biked, hiked and played another summer on a recreational slow pitch league (12 + years). I even got a gig to model in fashion shows for a local ladies clothing store. I had too many hobbies to list. I was having the time of my life until….
At the end of August, 2009 we went on a weekend camping trip. After returning, I was hit with a huge cold and the worse sore throat I had ever experienced. I tested negative for mono.
Then the severe insomnia hit. I barely slept for three whole weeks. I was like a walking zombie, but I still was able to function and go to work. I also started noticing that my walking was off, it felt like the floor was moving and that I was walking in a zigzag pattern.
I then tried returning to my boot camp class, and when asked to run up a flight of stairs, my body refused to do it. I felt extremely heavy and stiff. I remember going to work and I would just drag my feet, as I could not lift them off the floor. From that point on I had to give up all forms of exercise and most of my social life. I would come home from work totally exhausted and spend my weekends resting. I missed a few days of work here and there due to extreme fatigue.
I kept on deteriorating. There were up and down periods, and of course during the ups I would do too much, not realizing the damage I was doing to myself.
In August 2010 I had a few days where I felt “better”. I thought this is it! Whatever this was, it was gone…. so I played golf, I went kayaking and walked a lot during one weekend. By Monday I felt completely paralyzed, I couldn’t move my body and my husband took me to the ER where they found nothing wrong with me. That was the end of my normal life, as I knew it.
From that point on, I was no longer able to work, I was only able to walk from chair to chair and my life now included the use of a wheelchair for any outing. I had a few more of the “coma” episodes where I could not move but was completely aware of my surroundings. Those were really scary.
In December 2010, my family doctor who I had worked alongside of diagnosed me; she knew me well and also knew how much of an energetic person I was. I did not need to convince anyone that there was something very wrong with me. After all other possibilities were eliminated via various testing and specialists (including a sleep study, Lyme test etc.), a diagnosis of Chronic Fatigue Syndrome was made and a referral was sent to our local ME/CFS specialist. I was facing a year and a half wait, so in the meantime I decided to try one of the Fibro and Fatigue Centers (Dr. Teitelbaum’s clinics), the closest one being in Las Vegas. I would fly there every six weeks (mostly comatose on some trips) for the next six months until that clinic closed. I was given lots of IV’s, which would make me feel better temporarily, but wouldn’t last long. I was also placed on a huge amount of supplements and home injections, from which I didn’t notice any improvement.
After extensive blood work, I was diagnosed as having HHV6, EBV and NK cell deficiency: CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)
I Kept on Deteriorating…
In 2011-2012 I was completely bed ridden for nine months. For the most part I couldn’t watch any TV, read or listen to music. On some days light was too much to tolerate. On the really bad days I had to crawl to the washroom and be spoon fed by my supportive husband and daughter. Chewing food was difficult. Turning over in bed was a huge endeavor. I just watched my muscles wasting away. I had a microwave and mini fridge next to my bed so I could look after myself when I was alone.
I couldn’t nap during the daytime but my eyes were still closed most of the day. I didn’t find the days long because I felt “out of it”. Fortunately, I had amazing friends who would come visit me on the better days.
In April, 2012 I finally saw my local ME/CFS specialist. An extremely thorough visit was had with this amazing doctor and a very long report was written as a result. I had some blood sent to the US and it was confirmed that I had an active form of HHV6.
After some research, I asked that specialist if I could try LDN (Low Dose Naltrexone) and it was agreed I could. I noticed almost immediately that I felt less stiff and could move around more. I could now get down the stairs easier. I remain on LDN to this day. I don’t notice the benefits as much now but plan to stay on it for its immune modulating effects.
My doctor also communicated with the doctors at the Open Medicine Institute in California and I was prescribed a high dose of Famvir for six weeks. I didn’t feel any better after that. My goal was to get on Valcyte because I knew I had the same viral titers as the subjects in the Valcyte study by Dr. Kogelnik, Montoya et. al.
I wanted to have access to all the testing and treatment options Canada couldn’t offer, so I flew to OMI in November 2012. A marvelous doctor assessed me and my previous results were confirmed once again. Like I hoped, I was started on Valcyte. I tolerated the Valcyte extremely well. After a few weeks on the drug I came back to life and was no longer bed ridden. My physical and cognitive function improved. I ended up taking Valcyte for three years and I felt better for maybe half of that time. I was advised to stop taking the drug in Feb. 2016. During my last appointment at the OMI in June, 2015, I was told I showed all the signs of mitochondrial dysfunction. Rituximab treatment was mentioned but I was not able to afford it or willing to go that route.
Even with the improvement I had made, I was still only functioning at between 5-30 percent of normal.
Fast Forward to 2016 and Still Refusing to Give Up
At this point I was still mostly housebound and had next to zero social life. I mostly ddidn’t feel good enough to go out using the wheelchair because the visual stimulation caused overload and crash. I took a few small vacations with my family over the years but I spent a lot of time in bed while on vacation and was stuck in bed for weeks afterwards.
Over the years I have had crashes that lasted between a week and a month where I was bedridden.
Last summer I was not doing well at all, I caught a bad cold and collapsed from exhaustion even from having a short conversation.
At this point I had tried absolutely everything, except …
I started looking outside the box for answers and came across some videos by CFS Health (Toby Morrison).
I really liked his approach and watched several of his videos on YouTube. One night there was a live webinar on Facebook and I was convinced, so I signed up for the one year online Platinum Program.
With the program I have access to video modules explaining where to start and how to progress. There is no rush to get through these modules and I could go through them as my own pace within the year.
The first thing I had to do was change the way I was doing things. I never slept really well so I would not get out of bed until almost lunch time; therefore I would only eat two meals a day. I had to start going to bed and getting up at the same time every day, eating better and setting my baseline (I was taught to do something every day, no mater how small it was, that didn’t make me crash. Even brushing my teeth counted). This took me several months to achieve after doing the push crash cycle for many years.
This program is a multifaceted approach on all levels of health. It does promote restorative movement when the client is ready with their own baseline to start safely and effectively.
It was also important to do 50% less of what I thought I could do. Breathing exercises and meditation was now part of my daily routine. Eventually I added gentle stretches. I would only do one rep of two body parts every second day.
When I knew I could handle the easier stuff, I decided to do two wall pushups a night which only took two whole seconds, but once I spoke to my coach, she said that I should only do them every second night so that my body could recover. Those were the magic words I needed to hear to realize how long and slow this journey was going to be and that I would literally have to start from scratch. This was going to take a lot of discipline.
It’s like when someone has a stroke and has to learn how to do things all over again. That’s the way I finally looked at it. I was also concerned about my active viruses, and the way I understand it now is that if my immune system is stronger it will keep the viruses less active.
I slowly started doing things again, but very slowly. I went for a 75-step walk around the outside of the house every day but that was too much, so I decreased it to three times a week.
I was unable to read (once again) when I started this program, so I started reading 5 pages of a children’s book every night. Nine months later I am able to read for as long as I want. I did the same thing with jigsaw puzzles and rug hooking. I would set a timer for five minutes.
When writing a message or an email, I would write in small installments so that my brain wouldn’t fry. Now I am able to write a long email all at once. My brain has learned to adapt to the small bits of information I am giving it.
Since I had trouble having a conversation, I tried to strengthen my chest muscles by humming the first few notes of the Happy Birthday song every night. Eventually I was singing along in the car.
Since January I have kept a poster board of everything I do every day; it makes me accountable. When I look at my posters over the last few months, I can see my numbers increasing. It’s incredibly satisfying. My incidental movement has greatly increased and I can get around my house with no problem. I can now go for a 300-step walk every couple of days. I am able to leave the house about 3-5 times a week for short outings/ appointments, which I never thought I would be able to do.
Eventually I added more floor exercises and stretches, but only do one set. My entire exercise routine in the evening takes about 5 minutes and this is after nine months. I know there are programs out there which suggest doing exercise like one minute on and two minutes off. That was way too much for me. I had to start with seconds. The benefits I get from those five minutes are helping me rebuild my body.
I progress extremely slowly to avoid crashing. Ten weeks ago I started pedaling for 5 seconds every day. I am now able to ride a real bike on my street for two minutes! It takes time, but now I find that I am finally able to control the push crash cycle and stop doing something as soon as a little alarm goes off in my head. I still need to nap every afternoon but I feel much better on each side of that nap.
I had not been able to garden throughout my entire illness and this summer I started setting a 10-minute timer and packing up my gardening tools as soon as the timer went off. No cheating.
Doing everything extremely slowly and not pushing it has really done it for me. I have completely embraced the Less is More approach this program promotes.
I have not been bedridden in seven months!!! Usually that would happen at least once a week. My post exertional malaise (PEM) is also much more manageable.
The biggest treat with all this is I am living again!!! All the years being mostly housebound I had my own wheelchair but rarely felt good enough to go out plus my surroundings alone would send me into a crash. Now I am able to use my eyes again (without the use of any toxic anti-virals). I just attended a huge parade this past weekend. I had not been able to do anything like that in so many years. No more sensory and cognitive overload outside the house. I even went to a busy sci fi movie and was able to watch the whole thing without crashing on the spot!
For the past few years I have monitored my heart rate and made sure I did not go over my anaerobic heart rate (which for me is 106 bpm). This program also promotes not going over 50-60% of your maximum heart rate (220-your age) to start. If I wake up one morning and my heart rate is too high, it means: girl, you better take it easy today!
I believe for me to make any progress, my body has to recover between activities no matter how small. For a few months, between any activity, like washing some dishes or making my breakfast, I would lie down on a yoga mat and do guided meditation until my heart rate went back down.
Being in the program has kept me on track and getting constant encouragement. The Facebook Inner Circle page you have access to with the program is full of encouragement, with members posting their wins no matter how small they are.
My Coach is a young woman who fully recovered from ME/CFS and is the wisest person I have ever come across. I have seen the top specialists, but none of them taught me what she has. She truly gets it!!
Toby Morrison is incredibly dedicated to this program. He is a genuine, caring human being. He will constantly put out videos from wherever he is. He also has a lot of videos on YouTube for anyone to watch. His motive is truly to help.
The upfront, discounted cost of the program is $1499 AUD which includes the online program video modules covering all aspects of recovery, the Facebook online inner circle to connect with the other members, 12 group coaching webinars, and 8 one on one coaching sessions. There is also a monthly payment plan option of $150 AUD per month (12 months). If you need a second year in the program, it is 50% off the original price for ongoing support. cfshealth.com
After almost 8 years of trying absolutely everything and learning a lot along the way, I felt I was at the right place in my life (I had daily support at home so I could go at my own pace) to try something completely different. I am not saying it’s for everyone but it truly is for ME.
I still have a really long way to go but there is a light at the end of the tunnel, and it’s not a train!!! Hopefully, one day I will be able to say that my ME/CFS was just a speed bump on the road of life. Any improvement in quality of life is a huge bonus!!
Every one of us is different and not every approach will help everyone. If I can help even one person by sharing my story it’s good enough for me.
ME/CFS is a complicated and heterogeneous disease which, because it is almost certainly filled with subsets, will require many different approaches. No recovery or improvement story can speak to all patients or even a majority of them, and it shouldn’t be expected it to, Instead, recovery and/or improvement stories are presented on Health Rising primarily for one reason; if a treatment or approach works for one person, it might work for another.
- Check out pacing and exercise resources
- Check out two ME/CFS recovery stories in which pacing played a major role in a person’s health.
- CFS Health website
Check out Dan Moricoli’s story