CFS anaerobic exercise protocol (Staci Stevens): Can anyone explain it?

[fingers2022]

Glad I checked after the first half-hour of "Miss Marple"!

I agree we haven't got the the bottom of this - I expressed myself badly. What I should done was thank people for trying to help to get to the bottom of this! Thanks for the clarification, fingers. Staci's contact details are here - she's based in California.

Kerrilyn - I'll check if I can see the webcase but sometimes I can't and can't struggle with uploading the right software etc. - might need to wait for it to go up on YouTube or something. Thanks for the reminder!

Thanks Sasha, it's actions like yours (your response here and starting this thread) that embody the reasons for this forum.

The website will be a good starting point and maybe that will help me understand. I'll report back if I can add any value.

Get back to Miss Marple quick.

F

 

[Sasha]

Thanks Sasha, it's actions like yours (your response here and starting this thread) that embody the reasons for this forum.

The website will be a good starting point and maybe that will help me understand. I'll report back if I can add any value.

Get back to Miss Marple quick.

F

Thanks - good luck with the Staci stuff.

The butler did it!

 

[PoetInSF]

There is no doubt that strength training ought to be done in short reps with light weights with plenty of rest between the sets. But this idea that anaerobic is better than aerobic should at least be questioned. For now all we have is Staci Stevens work on VO2 comparison between CFSers and deconditioned subjects, and it seems that as many people crash after weight exercise as after walking. What we need is a study that compares anaerobic and aerobic exercises for the post-exercise effect and subsequent improvements.

Here is the result of my "clinical trial" with sample of 1:

10 min exercise with 10lbs weight according to CDC guideline = crash with no positive effect on my QOL

30 min walk + 30 min rest + 30 min walk = exhaustion immediately afterward but no crash next day. Elevates my mood and let me sleep well at night.

 

[fingers2022]

There is no doubt that strength training ought to be done in short reps with light weights with plenty of rest between the sets. But this idea that anaerobic is better than aerobic should at least be questioned. For now all we have is Staci Stevens work on VO2 comparison between CFSers and deconditioned subjects, and it seems that as many people crash after weight exercise as after walking. What we need is a study that compares anaerobic and aerobic exercises for the post-exercise effect and subsequent improvements.

Here is the result of my "clinical trial" with sample of 1:

10 min exercise with 10lbs weight according to CDC guideline = crash with no positive effect on my QOL

30 min walk + 30 min rest + 30 min walk = exhaustion immediately afterward but no crash next day. Elevates my mood and let me sleep well at night.

Questioned indeed. If I do short reps with light weights I'll still be aerobic. Apart from that bit, I thought your post was good, Poet. No one has answered my questions yet.

 

[xchocoholic]

Great thread ...

I'm not completely clear on how all this works either but I did fail the bike test that Pacific labs uses proving that I have a problem with exercise.

And last year when I went through PT for OI, I noticed that if I road the recumbent bike very very slowly I was fine for at least 10 minutes. That's all the time I was ever allowed to ride it due to time constaints. But if I tried to pedal quickly, I got winded, light headed and my leg muscles went into spasm within a minute or 2 at most.

My PT only included leg and foot exercises so I'm now trying to do a few core exercises to see if it helps.

I'm not sure yet what to make of my exercise tolerance. There have been a few episodes that lasted for a few weeks in the last 4 years that I've felt totally healthy and actually ran or skipped effortlessly. It was great but so far I haven't figured out why or how to recreate it ... no exercise intolerance or PEM ...

Nowadays, I always get PEM from overdoing it, like from spending 3 hours cleaning my back patio the other day. I rested every 30 minutes or so but the patio had to be cleaned so I just pushed myself ...

My PEM is always the same now and takes 3 days to get over. The first day, yesterday, was a waste and I laid out on the clean patio and zoned out most of the day. Today I felt well enough to get dressed so that I could run some errands but was so tired from getting ready that I had to lay down again. I got dressed twice today before I finally gave up ... lol ...

And tomorrow, I will be able to get out and run errands but not for long and I'll feel sluggish ... BUT ... If I rest up for 3 whole days, I'd be completely fine again ... as in I can run errands, do laundry, etc and can think straight the whole time as long as I eat every few hours and rest when I feel tired ...

Whatever is causing my PEM, it takes 3 days for me to process it ...

Maintaining our blood glucose levels may be part of the problem here too ...

I know that I have / had a sugar / blood glucose problem because when I tried to go on a low carb diet a couple of years ago, my blood glucose level stayed too low. I had to eat some fruit to get it up to normal and keep from fainting. The Paleo diet is known to correct blood glucose issues but it could be that it only helps diabetics and not chronic hypoglycemia. Although, Dr. Myhill recommends it to her patients with chronic hypoglycemia.

I feel better now when I'm out running errands than I did a few years ago but I still get fuzzy headed most of the time.

Maybe we'll figure this out here .. tc ... Marcia

 

[BEG]

Here is a copy of a post I made another thread:

Sasha, Your O.I. posts are great. First, to understand your heart rates you must get the CardioPulmonary Exercise Test. That's the test where they put the mask on your face and have you exercise on a bike or treadmill. Through this test, I learned that my anaerobic threshold occurred unusually early -- at 137. This means I cannot sustain this heart rate without exacerbation of symptoms. Actually, I feel badly at heart rates over 100 so that is usually where I set the high range on my heart rate moniter. Sometimes my heart rate goes over 100 just by standing up. You will also learn your VO2 Max or your maximum oxygen consumption. An 80 year old woman has a VO2 Max of 20; mine is 16. This test indicated I have a 35-45% whole person impairment. Stacie Stevens is an excellent person to work with and I highly recommend you have a couple of sessions with her. She told me that my ADL's (activities of daily living) make me crash, and that I wouldn't be able to tolerate any additional exercise. Good luck, Sasha, and keep us updated.

A quote from the test results: "The anaerobic threshold occurred unusually early in the patient, at 8.3 mL/kg/min (2.3METS, 20% of predicted max VO2 (normal >40%). This finding is typical of persons with CFS and FM. Heart rate at anaerobic threshhold was 137. Thus this patient cannot expect to exceed a work load of 2.3 METS, or sustain a HR above 137 without exacerbation of symptoms." (Underlining is mine.) I was told that if a CFS patient's AT is the same as his heart rate at rest, he wouldn't be able to get out of bed.

According to Dr. Bell, we have impaired energy ATP production. " . . . impaired energy production through impaired oxidative phosphorylation -- is the primary casue of the disability of ME/CFS/FM."

Just a month before becoming very ill with CFS, I was a water aerobics instructor. I worked out 2 times a week after work. When CFS struck, I couldn't walk from the parking lot to the building. My days of doing reps of anything were over unless I didn't mind feeling dastardly.

In short, Stacie Stevens has given us a tool with which we can avoid crashes and relapses.

 

[kerrilyn]

Here is the result of my "clinical trial" with sample of 1:

10 min exercise with 10lbs weight according to CDC guideline = crash with no positive effect on my QOL

30 min walk + 30 min rest + 30 min walk = exhaustion immediately afterward but no crash next day. Elevates my mood and let me sleep well at night.

Seriously, the CDC guideline for CFS is 10 min exercise with 10 lbs weight? That sounds completely impossible to achieve. I'd be a in a heap on the floor.

One thing that I think is easy to forget (and I think they mentioned it in that podcast) is that 'exercise' can/should mean any 'activity' - can't remember how they said it exactly. I know I seldom consider what used to be simple daily activities as exercise, but really I should.

Currently trying to remain upright long enough to make a simple one pot dinner is the extent of my activity in a day. It's been almost impossible to do that and keep my HR down, so either I ignore the alarm, push through and feel really sick till I must sit down, or I take a million breaks and eat at midnight. OR get frustrated, want to cry and just give up. For normal people I don't think making dinner = exercise. But the way it is raising my HR and making it feel like I ran around the block, it must be.

xchocoholic wrote:

I'm not sure yet what to make of my exercise tolerance. There have been a few episodes that lasted for a few weeks in the last 4 years that I've felt totally healthy and actually ran or skipped effortlessly. It was great but so far I haven't figured out why or how to recreate it ... no exercise intolerance or PEM ...

I'm a lot like that too! I can't say I have no exercise intolerance or PEM at those times, but great reduced at any rate. I know I can go for fairly long walks or clean the house and I have energy (more endurance) - it's remarkable. Like you, I have NO idea why because I don't change anything I'm doing to account for it, but every spring I've gone into sort of a remission. Once summer comes, with the heat/humidity, it's gone.

Some would argue that spring is here now, but I'm having a lot of OI symptoms, so I hope I don't miss out on my reprieve this year. My primary symptoms seems to change a lot given the season. Do you find it harder to 'pace' your activities etc when you have vast changes in how you feel at any give time?

I think for me, it's like a carrot dangling infront of my nose, and I want the feeling all the time. I strive/long to for it because I know I can feel better, but I lose sight of the fact that I'm teetering on the edge and I can equally feel much worse at any moment too..... if that makes any sense.

Thanks for that info again B.E. Girl (we were writing at the same time) - it's helped me a lot!

 

[fingers2022]

Here is a copy of a post I made another thread:

Sasha, Your O.I. posts are great. First, to understand your heart rates you must get the CardioPulmonary Exercise Test. That's the test where they put the mask on your face and have you exercise on a bike or treadmill. Through this test, I learned that my anaerobic threshold occurred unusually early -- at 137. This means I cannot sustain this heart rate without exacerbation of symptoms. Actually, I feel badly at heart rates over 100 so that is usually where I set the high range on my heart rate moniter. Sometimes my heart rate goes over 100 just by standing up. You will also learn your VO2 Max or your maximum oxygen consumption. An 80 year old woman has a VO2 Max of 20; mine is 16. This test indicated I have a 35-45% whole person impairment. Stacie Stevens is an excellent person to work with and I highly recommend you have a couple of sessions with her. She told me that my ADL's (activities of daily living) make me crash, and that I wouldn't be able to tolerate any additional exercise. Good luck, Sasha, and keep us updated.

A quote from the test results: "The anaerobic threshold occurred unusually early in the patient, at 8.3 mL/kg/min (2.3METS, 20% of predicted max VO2 (normal >40%). This finding is typical of persons with CFS and FM. Heart rate at anaerobic threshhold was 137. Thus this patient cannot expect to exceed a work load of 2.3 METS, or sustain a HR above 137 without exacerbation of symptoms." (Underlining is mine.) I was told that if a CFS patient's AT is the same as his heart rate at rest, he wouldn't be able to get out of bed.

According to Dr. Bell, we have impaired energy ATP production. " . . . impaired energy production through impaired oxidative phosphorylation -- is the primary casue of the disability of ME/CFS/FM."

Just a month before becoming very ill with CFS, I was a water aerobics instructor. I worked out 2 times a week after work. When CFS struck, I couldn't walk from the parking lot to the building. My days of doing reps of anything were over unless I didn't mind feeling dastardly.

In short, Stacie Stevens has given us a tool with which we can avoid crashes and relapses.

Hi Brown-eyed (classic song by Van the Man, with Eric Gale on elec guitar)

So you stay below your anaerobic threhsold, and therefore exercise aerobically?

Doesn't square with what Staci is trying (?) to say.

Amyone?

 

[BEG]

I think for me, it's like a carrot dangling infront of my nose, and I want the feeling all the time. I strive/long to for it because I know I can feel better, but I lose sight of the fact that I'm teetering on the edge and I can equally feel much worse at any moment too..... if that makes any sense.

Yes! Oh yes! kerrilyn, that is one of the most frustrating symptoms of this illness. The unpredictableness of this illness really messes with my life, too. How I feel varies day by day and even hour to hour. I never know how I am going to feel. You seem to have even a seasonal thing going on. Not being able to plan makes it difficult to get to dr.'s appointments (usually the reason I leave the house), and I'm not too popular because I've cancelled and rescheduled so many times.

I do hope you get your spring reprieve.

 

[Sasha]

So you stay below your anaerobic threhsold, and therefore exercise aerobically?

Doesn't square with what Staci is trying (?) to say.

Amyone?

Ooooh, I'm so confused, so confused!

BE Girl, I'm surprised Staci said you had an "early" anaerobic threshold at 137 bpm - it's usually said to be much lower (90 to 110). Have I misunderstood something (almost certainly)? Incidentally, the usual formula to calculate AT if you can't get to a lab to do a test is AT = (220 - age in years) x 0.6, so obviously the older you are, the lower your AT. I thought I'd just check to see if it might be so high because you were very young but solving that formual for your AT of 137 gives your age at minus 8 years, so I guess not! I would have thought that having an AT that kicked in early would mean a low AT heartrate, not a high one like that. Staci wasn't talking about your maximum heart rate, was she?

My basic confusion is about what is happening when I'm just sitting down. I'm not exercising, my pulse is about 65 bpm - surely this isn't anaerobic? So surely it must be aerobic, if there isn't another system of energy production that no-one has mentioned yet? And when I start walking, my heart rate will go up, presumably at some point I cross my AT threshold (my heart rate goes quite high when I walk) and my energy production is initially almost all aerobic, but then, according to that graph, the anaerobic component decays after two or three minutes and the aerobic system becomes dominant so I'm back in aerobic again even though my heart rate is now high... so how come this aerobic over the AT threshold is bad and the aerobic (if that's what it was) when I was under my AT threshold was OK?:worried:

Help... help...

 

[fingers2022]

Ooooh, I'm so confused, so confused!

BE Girl, I'm surprised Staci said you had an "early" anaerobic threshold at 137 bpm - it's usually said to be much lower (90 to 110). Have I misunderstood something (almost certainly)? Incidentally, the usual formula to calculate AT if you can't get to a lab to do a test is AT = (220 - age in years) x 0.6, so obviously the older you are, the lower your AT. I thought I'd just check to see if it might be so high because you were very young but solving that formual for your AT of 137 gives your age at minus 8 years, so I guess not! I would have thought that having an AT that kicked in early would mean a low AT heartrate, not a high one like that. Staci wasn't talking about your maximum heart rate, was she?

My basic confusion is about what is happening when I'm just sitting down. I'm not exercising, my pulse is about 65 bpm - surely this isn't anaerobic? So surely it must be aerobic, if there isn't another system of energy production that no-one has mentioned yet? And when I start walking, my heart rate will go up, presumably at some point I cross my AT threshold (my heart rate goes quite high when I walk) and my energy production is initially almost all aerobic, but then, according to that graph, the anaerobic component decays after two or three minutes and the aerobic system becomes dominant so I'm back in aerobic again even though my heart rate is now high... so how come this aerobic over the AT threshold is bad and the aerobic (if that's what it was) when I was under my AT threshold was OK?:worried:

Help... help...

Thanks Sasha, I think you've posed the question far better than I have.

You may even have answered it! So, first you have to get to AT. If your AT is low, you can get there quite quickly and without lifting a truck. If it's high, you might have to lift a small truck. (this troubles me a bit as my AT I think is quite high, possibly around 160-odd, so I have to be doing something quite intensive to get there, and this seems counter-intuitive to feeling ill!)

Once there, you have anaerobic energy only for a short time, so you need to stop exercising quickly to avoid going back to aerobic exercise......BUT, you will now be into the aerobic energy production anyway, but with your heart rate coming down as you recover.

NOW, is Staci saying that aerobic exercise up near your AT is bad for you, but just using the aerobic energy system sitting still is OK?

Maybe? If so why? Lots of questions, and I still think the podcast left a lot of questions.

I've tried to call Staci and sent e-mail but no contact yet.

F.

 

[kerrilyn]

I may be starting to understand this - or not - so if I confuse everyone else more, I apologize. I wasn't getting hung up on the terms aerobic or anaerobic because neither really meant much to me. And I don't think we can use target heart rate information because that's for normal people and we aren't normal. It's impossible for us to hit our age determined target heart rates.

I see what Staci's saying as two fold. Use the HR monitor as a test or guideline to have a concrete number to visually see (as a cue so to speak) when you are feel your symptoms increase. Because I can't have a Cardio test like B.E. Girl, and even she says she feels her symptoms increase at 100 vs what the official testing said of 137, use that information to keep yourself within YOUR limit. By doing that you will reduce episodes of PEM.

Most people do not realize that doing the simplest daily tasks with raise their heart rate. I knew I struggled but I didn't SEE how my HR was affected by the tasks. We cannot exercise aerobically, but if your HR raises past your threshold while you are making dinner, for example, then you are exercising aerobically and may be unaware of it and therefore you will pay for it later.

That is not the same as trying to exercise separately from the daily task information. If you cannot do daily tasks, you cannot try other exercise because you've used up your energy with just your daily tasks. What she is saying (I think) is the only exercise we can do, once we are strong enough is anaerobic exercise. VERY SHORT BURSTS of exercise that do raise your HR (this link says between 10-60 seconds). http://www.sparkpeople.com/resource/fitness_articles.asp?id=1035 But again, I wouldn't do actual running sprints or something at a 'normal' person would/could do.

I think the key difference it that is is not sustained. I *may* be able to do running in place (while sitting down - just feet moving quickly) for 10 secs, and then rest a long time to recover and get some benefit (to help strengthen my muscles) that I would not get from attempting to walk 10 minutes (aerobically), and then suffer with days of PEM.

But first I think I would need to do other strengthening exercises, which do not include lifting any weights at this time, because I know I couldn't.

Clear as mud?

 

[Sasha]

So, first you have to get to AT. If your AT is low, you can get there quite quickly and without lifting a truck. If it's high, you might have to lift a small truck. (this troubles me a bit as my AT I think is quite high, possibly around 160-odd, so I have to be doing something quite intensive to get there, and this seems counter-intuitive to feeling ill!)

Oh dear... oh dear... these high ATs (160 bpm for your, fingers, 137 for BE Girl) seem like superhero ATs, not ones for CFS people! How did you find your AT, fingers? Having looked at a few exercise sites, maximum heart rates are something like 200-ish and intensive workouts are recommended at some high percentage at that which works out in the region of 160-ish (depending on age and other factors) I think. People who are sick would be expected to have lower ATs, not higher ones - I'm confused that both of you have ATs that are so very, very high.

Once there, you have anaerobic energy only for a short time, so you need to stop exercising quickly to avoid going back to aerobic exercise......BUT, you will now be into the aerobic energy production anyway, but with your heart rate coming down as you recover.

NOW, is Staci saying that aerobic exercise up near your AT is bad for you, but just using the aerobic energy system sitting still is OK?

This is what I don't get - what's the point of avoiding going into the aerobic zone only to go into the aerobic zone? It simply makes no sense to me. Which again makes me wonder, when I am just sitting, is it aerobic? Or is Staci saying that aerobic below the AT is OK, above it is bad?

Thanks so much for contacting Staci, fingers, I'm totally adrift.

 

[BEG]

Hi Brown-eyed (classic song by Van the Man, with Eric Gale on elec guitar) So you stay below your anaerobic threhsold, and therefore exercise aerobically? Doesn't square with what Staci is trying (?) to say. Amyone?

Hi fingers! Yes, Van Morrison! How astute of you. Do you play guitar? I'm embarrased to admit that I like/love classic rock. It's something a person of my "certain" age doesn't often admit to.

Do you think we've beaten this dead horse of a topic enough? No. OK. I stay below my AT (anaerobic threshhold=without oxygen) because to go over the AT will make me feel incredibly ill. Let's face it, it's nice to have some oxygen going to the brain, heart, muscles. So yes, I only do activities (never would I call it excercising) which will allow me to stay within oxyen (aerobic) capacity. Unfortunately, for those with CFS, that capacity is very minimal (due to early ATs) and is the source of disability. I also have P.O.T.S. which complicates things and makes it hard to stand. Just standing makes my heart rate shoot upwards. (tachycardia) Not good, when my goal is to keep my heart rate down.

Sasha, I can't speak to your formula, but many factors contirubted to the calculation of anaerobic threshholed: watts, VO2, VO2/kg, VCO2, RQ, VE(BTPS), VEO2, and RR BPM. The test results consisted of 8 pages of complicated language and charts. If I could understand it all, I would have a PhD. in exercise physiology.

When you are sitting at rest, you are using some energy for bodily functions. I would presume the energy usage is aerobic. You have enough oxygen to handle the needs of your inner organs and your skin. (If, however, your resting heart rate is your anaerobic heart rate, I imagine that you would be in bed unable to get up without help and use of a wheel chair.) As long as you have oxygen available for your physical needs, I would presume that energy usage is aerobic energy. Don't we usually just say, "I have energy. YAY!"

My brain is gone now and I'm completely out of energy. What kind is that? CFS.

 

[Wonko]

I agree - too much is being made of the whole HR AT thing - the absolute numbers dont matter - what matters is getting a guide as to what you capicity is likely to be - and this will vary - it wont be as high on a bad day as a good day - or then again it might

the aerobic/anaerobic debate is also probably caused by simplification - types of exercise known as aerobic damage me - other forms seem to deplete energy but not damage me - as this exercise (lifting) has been described to me as anaerobic this made some sense - especially with hypothesised damage to the aerobic energy systems being a suspected component of M.E.

however what the actual definitions of aerobic and anaerobic exercise are - what precise mechanisms are involved - how they interrelate etc are only of academic interest/relevance to me - I've found somethign that at leat for now seems to work and do no harm (to me)

the problem with studying/testing on the "border" is the sheer time it would take - not to mention the risks - now I'm as up for destroying myself and being bedridden for months/years as the next bloke - if I can see the potential payoff - in this case I personally dont feel it's a worthwhile enough exercise to spend the time to the exclusion of everythign else in the certain knowledge that if I'm testign it pproperly I will end up in a less than optimal state - repeatedly

at this point I'll leave this topic as I suspect without input from someone who does understand these systems/definitions at a technical level we are, as it was put above, flogging a dead horse

 

[fingers2022]

at this point I'll leave this topic as I suspect without input from someone who does understand these systems/definitions at a technical level we are, as it was put above, flogging a dead horse

I got that bit. Wonko Well done B-e G !!:victory: ....and we must talk about the music, it's the only thing that keeps me goin' (down the old mine with a transistor radio.....)

Love and peace (remember that?) to all
F

 

[PoetInSF]

Seriously, the CDC guideline for CFS is 10 min exercise with 10 lbs weight?

No, CDC guideline is to start with light weight, like your own body parts, no more than 6 reps, with 1:3 ratio of exercise:rest.
http://www.cdc.gov/cfs/cfstreatment.htm#exercise

 

[PoetInSF]

Just a month before becoming very ill with CFS, I was a water aerobics instructor. I worked out 2 times a week after work. When CFS struck, I couldn't walk from the parking lot to the building. My days of doing reps of anything were over unless I didn't mind feeling dastardly.

In short, Stacie Stevens has given us a tool with which we can avoid crashes and relapses.

Thre relationship between HR and PEM also need to be questioned. As far as I know, there hasn't been any study to confirm the hypothesis "HR of less than X will prevent crash". It seems to me that it is only a construct extrapolated from VO2 study.

Here is one person's experience regarding HR: A few times I went to my old judo club and played a practice dummy for children and women. That was enough to raise my HR to the max as if I rolled with big boys for 2 hours just like my pre-CFS days. I feared bad consequence the next day. To my surprise, I felt even better than after slow walking which barely raises my HR.

 

[kerrilyn]

No, CDC guideline is to start with light weight, like your own body parts, no more than 6 reps, with 1:3 ratio of exercise:rest.
http://www.cdc.gov/cfs/cfstreatment.htm#exercise

Oh, ok, that makes more sense. Had me a little concerned there.

Here is one person's experience regarding HR: A few times I went to my old judo club and played a practice dummy for children and women. That was enough to raise my HR to the max as if I rolled with big boys for 2 hours just like my pre-CFS days. I feared bad consequence the next day. To my surprise, I felt even better than after slow walking which barely raises my HR.

Ow, that sounds painful. There may be individual factors going on for why people experience different things. I know certain activities flare up a variety of symptoms for me depending on the day, or even the season. If the activity is low-intensity (doesn't raise HR) but too long in duration, pain comes first and then PEM the next day. That can include just sitting or reading too long. And I don't really understand how I can have PEM type symptoms when no 'E' for exertion was involved, but I know I get 'sick'.

If an activity really raises my HR quickly (which I can't sustain) OI symptoms are immediate and then pain and PEM comes after. And I never really know which of the two is going to be more primary or which will last longer (they seem to adjust prevalence depending on the season). Lifting weights, can involve all three depending on exertion - but I'm left with muscles that feel like quivering jelly afterwards - and I don't like that feeling. I used to love to lift some weights are least, now my strength is definitely gone.

The very short bursts of activity I have not tried, I'll try anything once.

 

[Lesley]

I am going to email the CAA and suggest they do a webinar with Staci Stevens. The ones they've done have been great, and her approach to exercise and pacing using a heart rate monitor could make a difference to lots of people.