Nancy Klimas video on a safe exercise program, how to do this when severe?

[ixchelkali]

According to the research done by Dr Christopher Snell and his colleagues at the Fatigue Laboratory at the University of the Pacific, aerobic exercise is just what ME/CFS patients should avoid, because of the metabolic malfunctions in their aerobic energy system. They recommend that people with ME/CFS stay below their anaerobic threshold at all times to avoid post-exertional malaise.

http://forums.phoenixrising.me/content.php?246-Exercise-CFS-aerobic-VO2-Max-E-Word-by-Jennifer-Spotila&page=1

The Pacific Fatigue Lab model uses heart rate biofeedback to help CFS patients stay within a safe zone: activity must be under the AT and must be followed by sufficient rest. The patients heart rate monitor is set with an alarm for 10 percent below the AT. When a patients heart rate reaches that number, the monitor alarm sounds and the patient should immediately sit down and rest. The alarm is an objective measure of how hard the CFS body is working, and helps patients recognize when they are exceeding their limitations.

How might this translate into safe exercise? First, Stevens says that patients need to abandon the definition of exercise they had when healthy. Now, every activity should be treated as exertion and must stay within the safe zone under the AT. With that in mind, Exercise interventions for people with CFS/ME must be carefully customized to reflect the unique needs of each individual. Stretching and range of motion exercises can be implemented first, but the patients heart rate must remain below the target AT. Once these activities are well tolerated, a patient may experiment with short-duration (less than 2 minutes), low intensity interval training. Again, the heart rate must stay below the target AT, and each interval must be followed by adequate rest. Any activity that causes an increase in symptoms lasting more than a few hours is too rigorous, and should be reduced or eliminated.

Patients all along the continuum of illness severity may be able to benefit from this method. A bed bound patient may need assistance to turn in bed or complete basic activities such as showering, but heart rate biofeedback can help identify the appropriate pace and duration of these activities. Bed bound patients can also try deep diaphragmatic breathing, perhaps six deep breaths at a time. Deep breathing will lower heart rate, and also work the large muscles of the diaphragm. Severely ill patients might begin with passive stretching, where a physical therapist or caregiver moves the patients limbs slowly and carefully to gently stretch muscles and try to improve flexibility. Care must also be taken to avoid aggravating any symptoms of orthostatic intolerance, a condition common in people with CFS.

The fact that people with other illnesses may benefit from aerobic exercise really isn't germane to the question that was asked, and implying that ME/CFS patients would benefit from it could be damaging. Saying that aerobic exercise is the only kind that's beneficial is simply inaccurate.

The goal for ME/CFS patients is to move and/or exercise without raising their heart rate enough to cross their anaerobic threshold, so that slowly, over time, they will be able to raise their anaerobic threshold. Then they will be able to increase the amount they can do without triggering PEM.

 

[Valentijn]

OK I got it. I'm not right. So those with SEVERE CFS should not exercise.

Avoiding aerobic exercise is probably relevant to everyone with PENE, even moderate or mild cases of ME.

 

[Tulip]

Avoiding aerobic exercise is probably relevant to everyone with PENE, even moderate or mild cases of ME.

It should be avoided for everyone that gets PENE, yes. Dr Cheney has said that and has said that it can be fatal because everyone with ME is in some sort of heart failure. Bad all round..

I think the term "exercise" is incorrect and misleading for this disease and it should be changed to "movement".

From hooper biomedical (scroll down to 2006) And the below info is not in order.

http://hoopermedical.intodit.com/page/documented-cardiovascular-abnormalities-in-me-cfs

In his September 2006 seminar (available on a two-DVD boxed set from videos@dfwcfids.org ), Professor Paul Cheney again warned that aerobic exercise may kill the patient with ME/CFS. As before, Cheney acknowledges his debt to the work of Peckerman. Cheney noted that there is an objective database in key medical literature that includes evidence of diastolic dysfunction and heart failure in ME/CFS.

If patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea will develop, with ankle oedema and other signs of congestive cardiac failure.

The message from Cheney is clear: in order to stay relatively stable, it is essential for the ME/CFS patient not to create metabolic demand that the low cardiac output cannot match.

A mismatch between metabolic demand and cardiac output, even very briefly, will kill. A major cause of death in ME/CFS is heart failure.

 

[Andrew]

I am glad that Nancy Klimas goes to the trouble to understand exercise and CFS, but I'm disappointed in the fast and loose way she has or presenting topics. Check out my blog here and there's an article about exercise.

 

[penny]

I think the term "exercise" is incorrect and misleading for this disease and it should be changed to "movement".

Yeah, are they talking exercise or activity? The apparent focus (by the medical establishment) on "exercise" mystifies me. When I have a little more energy or stamina, I don't exercise, I try and do something that I can't normally do, like wash the dishes or do a load of laundry, or even sit up straight (oh the extravagance!).

Traditional exercise seems like a waste of a very precious resource when one is unable to regularly do activities of daily living.

 

[ixchelkali]

When I have a little more energy or stamina, I don't exercise, I try and do something that I can't normally do, like wash the dishes or do a load of laundry, or even sit up straight (oh the extravagance!).

Me, too! I try hard to avoid the push/crash cycle, but sometimes when you're out of clean clothes and/or dishes, you just have to wash something. Sometimes there are things that maybe you don't strictly have to do, but really want to, like washing your hair. Or sometimes it's more a matter of survival mode: getting something to eat or drink.

When you are not quite managing the activities of daily living, it's hard to justify the expenditure of energy on exercise. Which necessary activity do you give up in exchange?

I understand Nancy Klimas will be discussing how this applies to severe ME/CFS in an upcoming video. I will be interested in watching that one.

 

[justy]

Just to add my pound of flesh to the debate -for me i have been mildly affected and severely and moderately. currently i am on a good but slow upward path from moderate. I dont see how exercise will be of any help to me at all until i am completely well. once when mildly affected i could exercise such as walking and swimming but that was when i was nearly well. For now though when i start to feel better i increase my general activity levels. I dont stay at the activity level i was at but add in a few minutes of exercise because i would rather have more life. Surely walking around at home and gently pottering in the garden for 10 mins every few days as well as light housework and cooking is keeping me active and fit and as i improve and become more active then the deconditioning will also start to go.
For me i try to stay at a level where i am moving but not experiencing too much PEM (not succeeding tho) and i like to keep as actgive as i am -in the past even adding in a few yoga stretches a day is too much and tips me over the edge, therefore i have given up exercise until i feel better, even then i would rther go out for a few hours with my kids than lift some weights!
All the best, Justy.

 

[LaurelW]

"According to the research done by Dr Christopher Snell and his colleagues at the Fatigue Laboratory at the University of the Pacific, aerobic exercise is just what ME/CFS patients should avoid, because of the metabolic malfunctions in their aerobic energy system. They recommend that people with ME/CFS stay below their anaerobic threshold at all times to avoid post-exertional malaise."

Thanks for bringing this up, Ixchelkali. I just watched all those videos, and I'm really confused about why Connie keeps saying you need to stay in your aerobic zone. I got tested by Staci Stevens back in the early 2000s, and that's what she kept telling me, that the AT was the point which you need to keep your heart rate below, even during ADL's, and above that was the aerobic activity, which is what always gets people with ME into trouble, and indeed would always trigger PENE in me.

I am going to check my morning heart rate, though, and take it easy if it's 8-10% above normal, as that is something I hadn't heard before.

 

[LaurelW]

I'd really like somebody to explain this discrepancy between aerobic and non-aerobic zones I mentioned in the post just before this. Anybody?

 

[Tristen]

Laurel, I haven't seen the video's, but she couldn't possibly be saying to remain aerobic. That would ruin us in very short order. So, I'm not sure if that is a misinterpretation, or what.

 

[LaurelW]

Laurel, I haven't seen the videos, but she couldn't possibly be saying to remain aerobic. That would ruin us in very short order. So, I'm not sure if that is a misinterpretation, or what.

Agreed, but check out video 2 at the 4:52 mark. It says it right on the screen. I know, I looked at it with disbelief.

 

[PokerPlayer]

I was thinking about going to the klimas clinic, but this exercise program stuff helps everybody that has some sort of fatigue that is not caused by the illness most of us have here of cfs/me.

 

[Wonko]

As a general rule in order to "exercise" you need to have spare energy. Anyone with ME who is worse than mild (or mild/moderate) by definition doesnt really have enough energy to cope with the essentials (they may, in fact, have a lot less than required for basic independant survival). They dont have any "spare" energy, so they simply shouldnt be "exercising" in any conventional sense.

Just my opinion as someone with ME who does exercise when capable of it.

 

[justy]

As a general rule in order to "exercise" you need to have spare energy. Anyone with ME who is worse than mild (or mild/moderate) by definition doesnt really have enough energy to cope with the essentials (they may, in fact, have a lot less than required for basic independant survival). They dont have any "spare" energy, so they simply shouldnt be "exercising" in any conventional sense.

Just my opinion as someone with ME who does exercise when capable of it.

i have to say i agree with you entirely Wonko. If i have any spare energy i spend it on living, rather than exer4cising. If i were to exercise even very moderately 2 or 3 times a wekk my quality of living would diminish as i would have no energy for other things such as cooking my kids a meal or walking around my garden or shaving my legs and washing my hair or visiting a friend.

I have another question about exercise and avoiding PENE which is what about when cognitive effort creates PENE -it doesnt seem that that is taken into account when talking about staying below heart rate thresholds etc. for many of us we have to pace and ration mental as well as physical and emotional and stimulation energy -how does that play out in these exercise scenarios?
Justy.

 

[waiting]

Staci Stevens (Pacific Fatigue Lab) has an interesting paper from 2010 here "Functional Outcomes of Anaerobic Rehabilitation in a Patient with Chronic Fatigue Syndrome: Case Report with 1-Year Follow-Up": http://www.iacfsme.org/LinkClick.aspx?fileticket=nlLPqoWKBog%3D&tabid=446. Note that it's called "Anaerobic Rehabilitation", not "aerobic".

For specific exercise guidelines, see their papers here: http://www.cfids.org/archives/2000rr/2000-rr4-article02.asp and here: http://www.cfids.org/sparkcfs/working-out.pdf. Again, the exercise is anaerobic -- that is, it is 30 seconds or less maximum, followed by rest for each period of activity (total maximum 20 minutes, and this would be after a very long time building up to that). If you exercise for more than 2 minutes, you are into aerobic activity and that is contraindicated for ME patients. And if your Heart Rate goes above AT (anaerobic threshold), then you will trigger PENE. (The term "anaerobic" can be confusing for us non-physiologists but as I understand it, the anaerobic rehab that Staci is talking about is under 2 minutes duration + under HR at AT. If you go over HR at AT, that's called anaerobic, but the kind that triggers PENE.) Clear as mud?

 

[ixchelkali]

I just watched all those videos, and I'm really confused about why Connie keeps saying you need to stay in your aerobic zone. I got tested by Staci Stevens back in the early 2000s, and that's what she kept telling me, that the AT was the point which you need to keep your heart rate below, even during ADL's, and above that was the aerobic activity, which is what always gets people with ME into trouble, and indeed would always trigger PENE in me.

I know, it confused me, too. It's almost as if she's using the word differently or used the wrong word, but that doesn't seem likely.

 

[Wonko]

i have to say i agree with you entirely Wonko. If i have any spare energy i spend it on living, rather than exer4cising. If i were to exercise even very moderately 2 or 3 times a wekk my quality of living would diminish as i would have no energy for other things such as cooking my kids a meal or walking around my garden or shaving my legs and washing my hair or visiting a friend.

I have another question about exercise and avoiding PENE which is what about when cognitive effort creates PENE -it doesnt seem that that is taken into account when talking about staying below heart rate thresholds etc. for many of us we have to pace and ration mental as well as physical and emotional and stimulation energy -how does that play out in these exercise scenarios?
Justy.

I've yet to be convinced by the HR threshold hypothesis, when I exercise I regularly take my HR well above this limit for a few seconds without PENE as a consquence, although I stress it is for a few seconds only, followed by a rest until it's normal again before I do anything else. This may however be related to my chosen form of "exercise" which is not a typical choice for pwME.

One of the issues pwME seem to have is energy production/transport, I view this in a slightly different way, as well as the problem of energy prodcution/utilitsation there is also a problem that when your cells make energy they produce toxins (which cant necssarily be effectively dealt with in a low energy environment) and use up neurotransmitters (which again produce toxins which need to be recycled/disposed of). All cells do this, not just muscle cells, the cells components that make/recylce transmitters also produce toxins/waste when doing so, the cell components that clean up toxins produce more toxins in the process. With a sufficently efficent system this all works and apart from in extreme situations a postive balance is achieved.

However for pwME it's easy for this balance to tip into negative, no real idea why, I dont think anyone has, but lets just say the process is less efficient for whatever reason. This negative balance is PENE, so it can be brought on by anything (thinking, emotions, moving, eating a meal, whatever..) that uses up energy faster than the cells can fully process the metabolic cost of producing it.

From my own experience I suspect most of the deficit is neurotransmitter related, we simply run out of the ability/resources to produce enough and process/recycle the old ones. Insufficent neurotransmitters would cause havoc with the nervous systems, hormones, basically pretty much everything.


Just my own pet theory.

 

[Tristen]

Post exertion is surely the # 1 way to cause a "crash". But it's not the only way. There are a number of things that will cause me to crash without any increase in HR (heart rate). Some are in my control, some not. Maybe this Klimas program will help a person maximize abilities within their individual confines of the disease, and that's great, but I just don't see it being a "recovery program". Can't heal this disease with conditioning any more than one could do that with Cancer. Might feel a bit better and be able to push the limits a bit more, but I just don't see it having any significant effect on the pathology. And as we know all too well, we can easily cause relapse and even disease progression if not careful.

There is no way my AT, as determined by VO2 max, is any kind of safe boundary for exertion. I think 80% of that number is more like it, and that would be in very brief (<5 minutes) periods of exertion, which also shows that this is about more than just the AT. The other difficulty is that my "energy envelope" and AT fluctuate independent of exertion. These boundaries are not static.

My control is very precarious and fragile and, since I do want to maximize that control, I'm going to remain open until I see these video's (and only because it's Klimas). I'm gonna get an HR alarm watch, and create my own program. I'm also going to start watching the morning pulse.

 

[maz]

I haven't seen the videos but have been trying to tone and stretch my muscles the last couple of weeks (as and when I feel able) as I was hoping it may help the terrible back pain I get when I do get some energy and tidy up a bit. I have been very gentle on myself so wondered if I could do more without causing a crash.

I tried the method of getting my AT by 220 - my age (50) x .6 = 102. My resting heartrate is 84 (which goes up to 96 if I am upright). I decided to do the "plank" which strenghtens core muscles. You are face down, up on your forearms with a flat back and balanced either on your knees or toes. I can do it on my knees (only 30 secs) but I wanted to know if it was safe to take it up a notch and do it up on my toes (previously avoided as it is difficult for me now) - there were 49 beats in the 30 seconds I did it for so I thought I would be ok but I wasn't and felt horrible and sofa bound for the next 24 hours. So, my message is beware of using the method I used for finding your AT! The other thing I thought is that, as I wasn't using a heartrate monitor, maybe the problem was I wasn't able to accurately gauge how much my heart had speeded up over the course of the 30 seconds, it was only an average speed.

If that's what 30 seconds did to me, how do pwCFS manage to survive the VO2 tests? Do they spend the next month in bed?

 

[Valentijn]

I tried the method of getting my AT by 220 - my age (50) x .6 = 102. My resting heartrate is 84 (which goes up to 96 if I am upright). I decided to do the "plank" which strenghtens core muscles.

The plank is probably one of the hardest exercises to do, period. Even when relatively healthy, it was really hard for me.

Have you read anything about pacing? It's extremely important for us to use that technique to avoid pushing ourselves to see if we can do it, since it can cause a lot of damage.

If you're close to your 60% of max heart rate just when resting, that should be a sign to stick to very easy and light exercises, and for very short periods of time. If you want to push to that 60% limit, I suggest wearing a heart rate monitor while doing it.