“The Month Of ME’ - in response to a challenge and in recognition of the important role the term myalgic encephalomyelitis (ME) has played and continues to play in this disorder, August, 2011 will be the‘Month of ME’ on Phoenix Rising. We will examine ME’s role in this disorder throughout the month. All articles, blogs and posts produced by Phoenix Rising will only use the term myalgic encephalomyelitis or ‘ME’ unless ME/CFS or CFS is absolutely required. We encourage others to make this a “Month of ME” as well.
In parts I and II of Dr. Klimas’s Heart Rate Based Activity program we followed Brenda as she did her VO2 max test learned what it meant about her health and her activity levels. Now we shift gears a bit and look at how two people with myalgic encephalomyelitis have fared on the program. First we turn to Dan Moricoli, the originator of the ME-CFS Community website and CFSKnowledge Center.
Dan came down with myalgic encephalomyelits (ME) in 2006 as well. An avid exerciser before ME Dan got to the point where even mild exercise or activity could spark frightening crashes every day. As he described in this video which he has provided to Phoenix Rising members for its first release.
First the weariness would come on, then he would have trouble finding words and his speech would start to break up…..he would have trouble completing words….the word ‘and’ for instance, would become ‘aaaannnnnnnddddddd’, then he would get wobbly on his feet and sometimes his body would explode into ‘myoclonic jerks’ – his arms and legs wildly flailing about for as long as 2 hours.
When he was in his wobbly state a sudden sound or a flicker of a light – something unexpected stimuli -could was so disturbing that the only way he could describe it was as if his brain felt like it was being ‘shaken loose’. As Dan entered his wobbly state and begin to crash he would cut his stimuli to a minimum, go into his darkened bedroom, put on his CPAP mask and wait it out. When it was really bad he’d devolve into what he called a coma-like state in which, for from 1-3 hours, he was oblivious to the world. Early in the evening he would start to emerge from the crash.
Visits to several neurologists and several types of brain scans uncovered nothing. A neurologist who specialized in myoclonic jerks, however, suggested that deconditioning might be contributing to them. He stated that when Dan’s brain became active – there was no place for the energy to go in his present state and that his brain would send it out willy-nilly – causing his limbs to flail about.
This was a strange scenario for Dan. Once a avid exerciser, he had cut back on his physical activity only slowly and begrudgingly once he came down with ME. Too much activity or exercise inevitably sent his spiraling into frightful crash. (Being asked to breathe deeply and quickly at test at a hospital once sent him into a horrific crash – his limbs flailing about for several hours.) Exercise was big no no for Dan but after talking to Dr. Klimas he took the VO2 max and started the program in late Sept 2010.
By November he began to realize that his crashes were not only less frequent but that they were shorter as well. By December he knew it was really working. Since then he has continued to improve. At the time of our interview in July, 2011, ten months after he started the program he had crashed once in two weeks and then only for an hour and a half. His crashes are lighter as well; when he crashes he doesn’t go into that as he put it ‘unconscious place’ any more. Where he was able to work 2 or 3 hours a day before, he can now work 4 or 5 and sometimes more.
Very Little Exercise! One of the remarkable things about Dan’s success is how little heart rate based exercise he has done. The most frequently he does the heart-rate based exercise portion of the program is every other day. His normal resting heart beat is around 51…if it goes up to 54 he knows he’s going to have a bad day and exercising would make things much worse. If he’s consistently overdoing it in his daily life and his heart rate stays above 54 for a week then he’ll skip a week of exercise. He probably does the exercise portion of the program on average about 2 or 3 times a week. Still, the combination of rest and mild structured exercise along with his blood volume enhancer paid dividends.
After 10 months or so on the program Dan is to up doing three ‘blocks’ at a time; a block consists of him
- Aerobic - walking at 92-94 heart beats a minute for 5 minutes – then
- Active rest - laying down flat until his heart rate gets to 62 beats a minute or lower – which generally takes a couple of minutes, then doing 5 slow, very deliberate leg lifts followed by rest – then 5 mild crunches with no exertion with his heart rate not going above 72
- Aerobic - walking at 92-94 beats per minute for five minutes
Then next blocks are the same with arm exercises/yoga stretches substituted for leg lifts/abdominal exercises. He stated that
“I feel like a different person. I’m still sick but I’m much, much more functional now and life is much more bearable for me. I would say that 60% reduction of my symptoms is due to the exercise. The rest of it is due to pacing myself and resting. Once you start behaving yourself using the heart rate monitor its astounding what happens…. with very low exercise. I’m much stronger.”
Calming helps - Dan also uses the heart monitor to measure the effect of mental and emotional exertion on his health. He knows that being on the phone, problems on the computer, etc. all raise his heart rate and because he knows that continued agitation will contribute to a crash he works on calming himself. Dan is doing yoga and has achieved a remarkable calmness in the face of his physical difficulties; He said “I don’t get upset when I crash. I don’t fight anything anymore. I don’t resist my body. I just allow my body to do what it does.” Dan is still very limited. A quick look at his video shows significant progress but he is still clearly not well; there is still a slight slurr to his speech at times and he lacks some of the vigor that the old Dan would have shown.
Now we turn to Pat, someone with a less severe case of ME who has also not recovered but has made remarkable program using the heart rate based activity program and other treatments.
Looking back Pat noticed that when she gotten overly tired she’d had fluish symptoms and she did have a tendency to pick up bugs on her overseas trips and but the last bug she picked up on a trip to Africa was something else. A hardworking professional she got it , as she put it, by the ‘mother of all illnesses’. This bug put her down and out and eventually she had to stop working.Later tests showed she’d had a reactivated EBV infection but whether she’d picked up a really virulent strain overseas or if it was just a case of bad time (infectious mononucleosis in middle age is harder to fight) was unclear. What she did know was that the doctors in her area were no help and by Jan, 2010 she’d made her way to Dr. Klimas.
Exhausted, fluey, dizzy when she stood and bothered at times with weird myoclonic jerks in which her limbs would flail about, she was a mess. By that time she’d had a constant low-grade fever for four years. Too weak even for physical therapy she was up to doing maybe one task a day. Going out to dinner at night would be so exhausting that she would be unable to sleep. She had now been out of work for four years.
When faced with the idea of an ‘exercise program’ she was skeptical to say the least; she couldn’t imagine she would be able to strengthen her muscles without pitching herself, as she put it, ‘over the edge’. But after Immunovir knocked out her fever she started on Dr. Klimas’s heart rate based exercise and activity management program.
The Anti-Exercise – Exercise Program. This is not an exercise program that any healthy person would recognize. It’s breed into us that in order to get fit you have to really exert yourself, to be sweating and breathing hard but that is not the program Paula is on. She is on the ‘no sweat’ no heavy breathing, low heart rate, reduced aerobic exercise’ exercise program. She said
“I’ve never broken a sweat in any of my workouts. I’ve never gotten out of breath – NEVER! I call it the ‘Princess Workout’…I don’t sweat, I don’t get out of breath…..you don’t have to exercise hard to make progress. People think in order to get fit again you have to exercise hard. I never go over 110 with my heart rate.”
The abdomen is a key focus as studies have shown that blood tends to pool in the abdomens of some people with ME when they stand thus keeping it from the brain and contributing to their difficulties standing (orthostatic intolerance). Paula noted that she had ‘no abdominal muscles’ when she started but now can do what she called ‘fairly sophisticated abdominal exercises’. If fact without ever breaking a sweat her trainer told her that she was able to work her way up to doing abdominal exercises that other people cannot….
Deconditioning is something of a dirty word in the ME community but, yes, Pat’s illness had left her deconditioned and reconditioning ultimately was helpful. Our legs have a ‘muscle pump’ that is used to stop blood from pooling in them when we stand. Paula’s deconditioning had wiped out that muscle pump and that had contributed to her inability to stand without dizziness.
Slow, slow progress – Pat noted that it probably took 3 or 4 months doing a 20 (5/5/5/5) minute exercise program 3 days a week. (five minutes aerobic (recumbent bike), 5 minutes active rest (small hand weights on the floor), five minutes aerobic, five minutes active rest) before she started to notice a significant change but when she did – she really did.
I asked Pat to compare her quality of life after a year and a half on the program and she said
‘Oh my god’. I have a real life now. There are so many things I can do now that I couldn’t do before. I can take my dog for a walk. I can do five errands in a row. I used to be able to do one thing a day. Now I can do 4 or 5 things a day.””My home and social life feels normal to me. I can get all my chores done. I can go out at night. For a long, long time I couldn’t go out for dinner because I would get so exhausted I wouldn’t be able to sleep and it would throw me off for three days.”She stated “You can build an amazing amount of strength” without ever exerting yourself aerobically over time and that ‘being physically fit makes an enormous difference”.
Over time she has been able to increase her exercise duration and severity. A year and a half later she’s way past the 5-5-5-5 anymore. Instead she does a number of machines on the gym – always watching her heart rate…if it goes up ..she takes a break until it settles back down into the 80’s and then starts back up again.
Her work life is another story; she is working part time but doesn’t have the energy reserves she needs in a more substantial way and my impression was that she was not planning to fully re-engage in the high stress occupation she had been in. That’s no surprise, she still does, after all, have ME. She cannot stress her body; ie raise her heart rate and exercise vigorously without suffering the consequences but she is much, much better off.
A Comprehensive Approach - Pat described her experience as going from the’ vicious cycle’ to the ‘virtuous circle’. She took a comprehensive approach to heart rate management. Besides the immunovir, some nutrients and the exercise program she also used the meditative practices in Ashok Gutpa’s Amygdala Retraining program to keep her in a calmer and more tranquil state. She felt that being able to face things calmly was ‘critical’ and that given her low energy state she just could ‘afford to let her body get stressed’.
The Turtle Not the Hare - these programs take time….it took both of them several months before they noticed improvement. Dan is convinced he can improve much more. Neither is back to their pre-illness state – Pat wouldn’t consider being back at her stress ridden full time job. Dan hardly resembles the business owner and workout nut he used to be -both retain very significant limitations but both have improved their functionality and quality of life greatly. Both have a ‘zone of health’ that they did not have before and are thankful for that.