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.
Nathalie’s first job – getting off the push-crash cycle
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.
WIth her system able to tolerate very little activity, Nathalie embarked on a very slow and gradual ‘exercise’ or activity program.
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.
Nathalie used heart rate monitoring to help determine when she’d overdone it and when it was safe to do a bit more. .
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.
Sincerely,
Nathalie
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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
Price Tag involved no thanks bye besides a Classic Case of Ehlers Danlos Syndrome Hypermobility EDS3
Csn someone explain to be the mechanism by whuch ehler danos can cause quick onset chronic fatigue and pem?
Look, just because someone, somewhere, finally got properly diagnosed with EDS years after years of suffering assumed to be because of CFS, doesn’t mean that everyone who has CFS is also an undiagnosed EDS sufferer! This is a basic error of logic. Yes, it is important to exclude EDS as early as possible, just as it is important to exclude Hashimoto’s disease, Graves disease, Guillain-Barré syndrome, Lou Gehrig;s disease, etc etc
But people who argue that CFS is merely “this” or “that” other condition that one “CFS” patient they knew, turned out to have, are not helping anyone.
Thanks Phil, you are right. I got tested for absolutely everything and saw so many specialists and ME/CFS is what I was diagnosed with. Wether the viruses triggered it or having ME/CFS did. Which ever came first we will never know.
The fact that you got tested and tried everything you could is one of the things I like about your story, Nathalie. I hope that you slowly continue to improve: let’s revisit this in a year or so and see how you’re doing. Good luck!
Thank you Cort for sharing my story. It would have felt wrong to me not to share something that is finally helping me after all these years. After just over a year in the program, I am amazed at the amount of people I have seen make huge progress. More than I have come across in all of my eight years of illness. I will always be grateful for finding this program. It truly is the most positive and genuine place for me. Also the information in the program has greatly improved since the day I joined. Yes let’s revisit this in a year and I will let everyone know here how I’m doing. Good or bad :).
Hi Nathalie! My story is very similar to yours. I crashed after running a half marathon and getting sick in Costs Rica…and every time i “feel a bit better” i do something that sends me over the edge! Even today i was feeling so good because i finally slept 6 hours and i went on a walk with my dogs…crash, burn, no sleep. I really really needed to read this. I chronically push myself. I have all my life. I’d like to do this program. Where can I join? I need the support. Thank you so much.
CFS is 100% EDS misdiagnosed the Name ME/CFS is a label so is Fibro…I also read her entire story above she was saying things worked, they did not work & here is Why she has EDS there is No Treatment for EDS
I have read so many testimonials re the power of pacing. No question that it works for some of us! I took a class and have embraced it fully, but remain in steady decline. Six years into this ordeal, I am wondering if the failure of pacing in my case may indicate a different or additional diagnosis? I have seen two NYC clinicians who are internationally known for for their expertise in ME/CFS, but two other specialists who profess to know nothing about it (a neurologist and a rheumatologist) have been more thorough in their search for clues. This is not so much a cautionary tale as a heads-up for folks lucky enough to have access to ME/CFS-specific medicine and pacing support. If it doesn’t work, don’t rush to ditch it. But DO keep exploring. You might have something else.
Good for you for trying. I think that pacing probably does not work or help much for some kinds of ME/CFS. I vividly remember a Lenny Jason study of some years ago which found that pacing or other coping techniques simply did no good for a substantial number of patients (20%????).
My guess is that pacing/activity management probably helps people whose system benefits from and can renew to some extent from rest as well as people such as Nathalie who can very slowly prod their systems to accept a bit more. There’s still a bit of resilience in these peoples systems.
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
I love Toby Morrison. I haven’t done his program but I love the positivity he brings to the me/CFS discussion. If I remember correctly He was hit with CFS as a teenager and the research is starting to show that there is a higher rate of recovery the younger you are at onset, but as Nathalie’s example proves – it’s possible later in life too. Agreed it may not be for everyone but then again – not everyone may be disciplined enough to keep to a strict pacing regimen so can we really say it doesn’t work? I mean this is incredibly small incremental progress over quite a long period of time. I know I haven’t been brave enough to commit to that type of discipline. I hope to try in the future though!
Thanks Joanna,
There is no way I would have been disciplined enough eight years ago to follow this program. I was in top shape before getting sick and having to start gentle movement for seconds a day would have sounded ridiculous to me. I never though I would ever get out of the push crash cycle. Whenever I have a tiny bit of energy, I would use it. The next day if I felt ok I used some more. All along knowing that my Post Exertional Malaise didn’t hit me until two days after doing an activity. No matter how many crashes, I still wouldn’t listen to my body. Being Type A personality certainly didn’t help things lol.
I have FM, not CFS, but my story is very much one of 20 years of never making the connection between “pushing myself”, and ending up in worse pain and dysfunction a day or more later. Indeed the long term trend was one of decline, all the while I was “fighting” and “doing self help”.
People like me prove that it is nonsense that FM has an “attitude” or “psychological” cause. Yes, people who have an attitude of capitulation or resignation, won’t get better. But again, it is a matter of logic; just because people with an attitude problem don’t get better, doesn’t mean that everyone who doesn’t get better, has an attitude problem! Plenty of us have been fighting hard all along, just not doing the magical “right thing” because the condition is so poorly understood. Plenty of us were competitive athletes when we started succumbing to FM, and kept pushing ourselves for months and even years, in denial. Getting totally humiliated in competition, obviously not the same physically endowed person we once were.
But while quite a few things seem to help as part of an overall protocol, I think the single most important thing, that decides whether the overall combination will help or not, is doing as much scientifically paced “training” as possible at the right intensity that will not be just doing harm later. I rate myself as 80% cured after 4 years of testing this hypothesis. And 4 years ago, I was at my worst ever, struggling to stand up from a sitting position because of the burning pain in my knees and quads. Now I do Yoga. The better I get, the more I can do, and the faster I get even more better.
Thats wonderful Phil, congratulations on getting 80% better! Amazing what can happen when we really listen to our bodies.
I don’t have the luxury to try. I have no doubt if I could take it easy it would be nice. I have to push and crash. Here is hoping 2020 will bring something helpful, some light.
It really is about discipline – that’s a big issue for me – plus there’s the need to work and make money which is an issue.
I’ve found pacing very helpful, and I’m glad it works for you Nathalie. But I do find it concerning that Toby Morrison charges so much when there are other clinics using the same principles for far less cost – or no cost at all. Given he has no formal medical training, I presume he took what he learnt at the Austin hospital (or was it the Alfred?) and has applied this methods to his practice, which seems slightly disingenous to me as he is charging through the nose for information that was passed to him for free.
I should add I bought his book and my appraisal is based on the information contained within. When I was purchasing the book, his website automatically added DVDs to my cart withou my knowledge, and I would have been out of pocket a significant amount (maybe $60?) if I hadn’t picked up on it. There would have been many ME sufferers caught out by this tactic, which told me all I needed to know about his business.
Hi Siobhan. Having been in the program myself, I can tell you that your assessment is reasonably correct. If you have bought his book, then his program really does not offer much more than that.
I think that the benefit of his program is mostly the support you recieve from the coaching aspect and the member community. This helps provide people the encouragement and structure that they may be lacking.
It is the same story for a lot of things in the world. There is a choice between learning what you can and going it alone cheaply, or spending a lot of money for close attention from an expert. There is quite a difference in value-for-money.
I think when you say “I think that the benefit of his program is mostly the support you receive from the coaching aspect and the member community. This helps provide people the encouragement and structure that they may be lacking.” , you are absolutely correct, but if that is what helps people get better then we should all have access to it – pity its not free. I also believe it is the support and structured help that gets people well in. I need a LOT of support but I have to do this all alone and it is blOOdy hard if not impossible on my own. But no $$$ as not working with CFS .
This is my sister. This is the strongest person I know. I have gone through cancer and survived but I think what she is going through is so much worse and is 100 times stronger than I am. If anyone can beat this, she can. She is the most determined and strongest person I know
This is such a rough disease isn’t it? Few diseases can bring one lower than ME/CFS. Thanks for watching out for your sister…She’s lucky to have you.
I’ve been in Toby Morrison’s program.
My impression was that only a very small portion of his customers are seeing any significant results.
For those that found significant benefits, I’m glad.
I would just prefer it if the directors of the program were clearer on the actual success rate, instead of over-marketing.
Thanks for sharing your experience. I have no doubt that some people thrive on Toby’s program. I imagine that many people benefit – the principles – the heart rate based program that is very carefully done – are good ones. A great question is how many people make really significant progress. That would be good to know.
I suspect that the scientific pacing is still vital and would be part of the successful program for everyone, but those who are not benefiting may need one other element (diet, supplementation, diagnosis and treatment for co-morbidities, etc)
What I like about Toby’s program is that he has tons of videos on YouTube and constantly posts videos on the CFS Health Facebook page which anyone can follow. Anyone can benefit without the cost.
I think the succes rate for following a program like this one would depend on a lot of different factors. Like anything else, it takes commitment and hard work. Everyone is different and at different places in their illness. I am very lucky that I am not working and have the support at home to strictly pace and to follow all aspects of the program. I have always been a perfectionist but not when it came to my health. I am so dedicated to this that I have been keeping track daily on my poster boards since last January. If I don’t do my activities and document it daily, then I am letting myself down and no one else. I am finally holding myself accountable for my own health. Again everyone is different but rebuilding my body from scratch is helping me. Before I felt so helpless but now the tiny improvements are gigantic for me and I feel some sense of control. I wish improvement for anyone with this horrible illness regardless of how they achieve it. Thanks for reading everyone 🙂
So good to hear Nathalie 🙂
Congrats Nathalie. Keep on improving and thanks for sharing your story.
When I read your story I see some parallels with my early recovery. I’m always on the look for trying to find what part of a success story might be the core of it.
As I see it in so many recovery stories there is the “therapy” that contains a mix of helpful, neutral and counter effective things. Getting a better “mix” with more helpful aspects then counter effective ones and that at the lowest “cost” to the body is what I aim for. Of coarse it is no exact science at all. But getting that mix better, either by luck or tiny choices made, I believe does contribute to success chances. After all, if one is so severely sick one can’t afford to do a tiny thing too much that weakens one…
So let me highlight what I experienced with pacing:
* “It’s like when someone has a stroke and has to learn how to do things all over again.
-> I had to relearn very basic stuff after crashing and getting in the ER. It were things like learning to walk around big objects, learn to open a door and passing trough it without bumping into it (even when doing slowly), standing up from a chair. What I surprisingly still could was stand on one feet an put my stockings on. There were other likewise things. Since then I learned many times that things were so much easier if I could break them down into a simple sequence of slow movements compared to do a “complex” compound movement at once (like walking around a table! where you have to move hips, feet… at the same time while keeping balance).
* “setting my baseline”
-> I too use a sort of baseline. In my case it is more like a “minimum” day I can keep doing with very low chance of PEM. I started trying to get a stable baseline first. That took a lot of time (and some redo’s when it didn’t appear to be stable enough). Then I can add some activities. The use is to reduce the very costly PEMs and to be more sensitive about how new things/activities impact me so I can learn and adapt better when needed.
* “I progress extremely slowly to avoid crashing.”
-> If I have any crash small or big, it’s a clear sign of me that something was (way) too much for me. With having a slowly evolving baseline it’s easier to sort out what it may be.
* “I slowly started doing things again, but very slowly.”
-> The things you mention underneath this sentence show a pattern: what you do very slowly and build up gradually you get better at. Despite I do have a somewhat similar approach to getting better, I do get better “in a different way”. What I mean is that I do not get better at for example reading a book or watching a movie. But I do get better a playing a game of cards with my dad (I can beat him 3 times out of 4 again now by having a better strategy and reasonable good remembering the played cards *but* my short term memory for others things did not nearly improve as much. I have a decent attention span for playing cards as well now, but for general activities it’s at a five years old level). The things I got remarkably better in are those things in particular I trained slowly. Just doing things a lot did not help if it doesn’t include a sort of slow and patient learning phase.
* “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.”
-> I learned too: A) don’t do complex activities or multi-task at all. Trying to gain time and reduce effort by taking two different sized objects under each arm to walk less steps is a total waste for me. Combining things is far too complex making the cost far outweigh the benefits. B) I don’t follow one activity directly after another neither. I don’t care if it did not seem to cause fatigue. I wait until “the previous activity has worn out of my brain and body”. Even healthy people are over-exhausted (or over-stressed) when activities are interrupted every five minutes. Just consider how long it takes for for example watching a move to wear off before you can fall asleep. It is less obvious during the day but it’s still there to a large extend.
Recently I started to pick up some light household activities to take the burden of my parents hands. I’ve been terrible at it for several years now. But this time I took the approach to deconstruct these activities to small consecutive parts and made a plan to learn them step after step as if I were a toddler. Doing only basic things tiny bits at a time and repeating them again and again (just like infants learn) works really well for me. I may be eating variants of the same dish too often now, but I re-learned several basic activities far better than I ever anticipated. Important here is the difference between my brain understanding how to do basic things like putting a pot on the fire and my brain actually being able to do it.
Re-learning near everything in a slow, patient and systematic way may be an important overlooked part of the pacing success stories. It’s also needed for basic physical activities in my opinion. I now “re-learn” to use the muscles in my shoulder for example. It may sound ridiculous to re-learn such basic activity doesn’t it? But when I asked exercises to gently increase mobility and bloodflow in the shoulder area my physical therapist told me I was not moving my shoulders backwards at all but just my torso/hips. I surprisingly couldn’t move my shoulders and had no clue on how to do it. Same happened half a year ago with my diaphragm and to a reasonable extend my chest muscles. So basically I had near no usable “knowledge” on how to affectively use the main muscles controlling breathing. With that view in mind it isn’t surprising my breathing was very poor.
I’ve written things on re-learning before, but still complex and too vague. Maybe it is as simple as this: there are these stories about people only being able to play darts well after having drunk enough alcohol because they only play it in the pub (when drunk). There are also stories about alcoholic students that have to drink a pint or two before an exam as they only studied with too much alcohol in their blood. So while the alcohol should make performance worse, the “you’ll perform best in similar conditions as you learned in” still dominates.
We’ve been learning so many basic skills (like reading, walking…) with a healthy body and mind. Being so severely sick we have got a total different body, being so much weaker, stuck in mobility and damaged and our brain is but a shadow of it’s former self. So what we learned is so far from a good match to our body and brain that it is *very* inefficient. It’s worse than knowing how to drive a sedan car and now having to drive a 50 metric ton truck with double trailer: skills are a total misfit. So going very slowly (as we have very few energy and poor brains) to a re-learning process may be needed to reduce the burden on our brain and body in the long run by being able to do things somewhat more efficiently.
It’s still not a fixed idea, so everybody please feel free to add your thoughts and experiences: may it be an important “thing” in improving?
I remember seeing a Rolfer who told me I was not moving my legs correctly. Instead of moving them from my hips I was moving them in another less efficient manner (I think was the gist). My muscle stiffness and overall body rigidity seems to make it very difficult to move smoothly. Where I would glide before I clomp now. Sometimes putting myself in a meditative mode allows some relaxation.
Your attention to your movements strikes me as being similar to walking meditation Buddhists do. I wonder if we can relearn some of the more natural, relaxed and easeful movements which, for me, were second nature prior to ME/CFS.
Very insightful I love it! Yes I truely believe re-learning is part of getting some quality of life with this illness. Thanks again for sharing your story!
Hi Cort,
I managed to improved the mobility of my legs, arms and neck on my own to some extend (be careful with the neck region, always ask the help of a professional unlike I did at first). But asking my therapist to guide me further improving my legs was more then worth it. Where my progress (of my legs mobility) was near leveling of, she helped lifting it to a higher level.
For my shoulders, my diaphragm and chest muscles I could not do it on my own. As long as “something” is moving I have no clue what I do or how I could improve it. She helps me visualizing the movement, that is really helpful to me: it is in line with my style of learning new movements. I can discuss with her what goes wright or wrong, what I try to do and how it feels like. She is very intuitive and gives valuable feedback so I’ll know in what direction to go. According to her it helps that I have a good body awareness. I am generally not good at learning new movements. I think I need a good therapist that works well with my particular style of learning. I’m lucky to have found her!
For my shoulders she started by giving me a set of very gentle exercises and some additional gentle ones. I got stuck at the first ones that are supposedly really light for everyone. Even while reducing the load a lot it remained painful and caused constant inflammatory up-flares and increased stiffness in the shoulder area.
After she broke up the exercise in smaller well defined parts I start to see actual shoulder movements after about 10 days. It’ll take me another 3 months to get decent with it and more time to get good at it. But the daily effort is small and decreases over time while increasing the advantages.
I do not go with the “in order to improve you have to get worst first” thing. When it feels wrong, it often is. When it isn’t, going slower yields often the same or better results in the long run without the drawbacks. Not going through these oscillations helps me having a good and slowly improving baseline, making me more sensitive to changes both good and bad when I try something. So I’ll put my load at less then one fifth of what I think I can do.
It is very interesting that Dejurgen has so many of the same positive learning experiences as me. Although I have FM, not CFS.
I don’t know what is the mechanism for muscle-recruitment dysfunction in CFS, I think it is different to FM, which is actual biomechanical impairment relating to the myofascia.
But as I have got better, and started looking for further means of improvement, I have found Feldenkrais to be the absolutely perfect approach for re-education of muscles and movement. It is beautifully gentle, often so gentle that you wonder how such impressive changes took place as a result. One-on-one with a practitioner will get the fastest progress, but cheap group “movement lessons” are beneficial regardless – and there are online resources. There are literally hundreds of different “lessons” to target every imaginable movement of the body and limbs. Basically when you are totally dysfunctional, like I was, every lesson helps improve SOMETHING!
The community of Feldenkrais enthusiasts are extremely positive, everyone has a story of personal benefit in their condition, to tell.
Feldenkrais sounds very interesting Phil, I will look into it. Thanks for the information.
That is great information Dejurgen. Sounds like you hit the jackpot with that therapist!
Unfortunately Toby does himself no favours in the first video on his website which was an interview on Sunrise television program where he shows himself to be a liar by stating that “I haven’t had one client who has not benefited…”
Toby Morrison is difficult for me.
Often he is a fantastic advocate and a genuine supporter for people with CFS.
However, he’s not medically or scientifically trained so will often make statements that are not particularly valid.
He also has a significant vested financial interest which clearly influences the marketing of his program.
This is why we ultimately rely on peer reviewed science to help us make decisions.
Here is something to think about. The CDC has found body burdens of all kinds of toxic chemicals in a sample of Americans.https://www.cdc.gov/exposurereport/pdf/FourthReport_ExecutiveSummary.pdf Some people have a genetic deficiency in the ability to break down chemicals. If these individuals are exposed to a new immuno-toxic virus, there is a potential to constantly reactivate this and opportunistic viruses and/or bacteria when stress, aerobic exercise and other factors cause toxic chemicals to be released into the blood stream.
This was 2017. The price us now abt $600 NZD month for minimum of 9 months. That is over $5000 NZD. I think Toy sounds great on his videos and I am sure people do get well. CFS recovery videos are multiplying by the day on YT. people are getting well, and in similar fashion. Some have done a programme like Toby’s with coaching. I am unsure as to how much one on one coaching u get in the programme now, or if ot is all group coaching which seems to be the go to these days. There are now CFS recovery programmes galore available. I have not worked in 10 years so have no money for any programme, I would do one if I had money. Would it work ? Who knows. I want to hear from people who have done his programme and not improved though and why. I did LP course and it did not ‘cure’ me yet ‘cured’ my friend of her CFS for good.