Re: Caloric Burn between CMT and non CMT persons

[Guest guest]

I have no documented evidence or studies to either prove or disprove

this nor do I have the inclination to search this data out.

While 'intuition' might suggest a much higher caloric requirement for

us with CMT, I see other factoids that suggest either no greater

requirement or perhaps just a teensy bit more energy required.

1. I believe that a certain amount of energy (calories) is required

to move a certain mass, for example a leg, or perform a certain

task. This remains essentially the same whether we have a

neuromuscular disease or not.

2. Due to our nerve deficiency and/or muscle mass loss, we CMTers

end up using other muscle groups than most normies do, ie., muscle

group recruitment. As these muscle groups have different attachment

points, angles of leverage, etc., we may suspect a greater use of

energy from lack of efficiency but I hazard this might not be that

great.

3. Also because of muscle recruitment, I believe we appear to work

harder and struggle more when we walk, lift, etc., open surgical

instruments, and struggling does suggest a higher energy cost whether

this is so or not. Parenthetically speaking, in my case, one of my

own earliest and non-ignorable signs was my funny gait - the

orthopedic surgeons where I worked all thought I had ACL/PCL/MCL knee

problems from skiing but that t'wasn't so.

4. Again due to our nerve deficiency and/or muscle mass loss, we do

use a greater percentage of our remaining resources. While perhaps

the overall caloric requirement would be no different, we have the

fatigue because of lack of reserves, ie., fewer motor groups doing

more work.

5. On a general note, we might expect our basic caloric requirement

to decrease because of loss of muscle mass and loss of muscle tone.

Ergo, cold extremities.

If the above hypotheses have not been tested already, I freely grant

anyone my permission to test them.

[Guest guest]

Hi Auggie,

Haven't seen any research on the specific caloric burn issue you

brought up. But see below for some interesting info.

Gretchen

Med Sci Sports Exerc. 1984 Oct;16(5):460-5.

Effect of training on the exercise responses of neuromuscular disease

patients.

Florence JM, Hagberg JM.

Patients with neuromuscular diseases have low levels of

cardiovascular fitness and they fatigue rapidly during daily

activities. The purpose of this investigation was to determine

whether patients with slowly-progressive or non-progressive

neuromuscular diseases could complete a 12-wk training program

without untoward responses, and develop cardiovascular training

adaptations. All eight patients completed the training program with

better than 90% compliance. Resting creatine kinase and myoglobin in

the group as a whole showed no change with training, though two

patients did have definite elevations after training. Their VO2max

increased by 25 +/- 5% with training and their relative increase in

VO2max was not different from that of healthy subjects undergoing the

same training. Heart rate reductions during submaximal exercise were

somewhat delayed or non-existent in the two patients with Charcot-

Marie-Tooth disease, a hereditary neuropathy. However, the six

patients with myopathies had heart rate adaptations similar to those

in healthy subjects. Thus, some patients with slowly-progressive or

non-progressive neuromuscular diseases can undergo exercise training

and in many cases demonstrate adaptations not different from those in

healthy subjects. Patients with different diseases, however, need not

respond uniformly, in terms of training adaptations or markers of

muscle damage. Therefore, each disease must be considered

individually.

[Guest guest]

Here is a study that might help answer this question.

http://www.nmdinfo.net/Publications/Consensus%20Conf%202002%20Papers/Mc.pd\

f

http://www.nmdinfo.net/report_retrieve.php?Report=0024

See the sections " Objective, Quantitative Measures of Physical Activity in NMD

Populations " and also " Functional Limitations. "

They did demonstrate that the energy cost with a specific movement is higher in

those with NMD, i.e. the energy cost to run 100 meters is greater.

However, our overall energy used in a day is still much less. As a group, we

are more sedentary, have a greater fat to muscle ratio, burn fewer calories when

at rest, move slower and with less intensity, exert less energy overall, and

burn far fewer calories in a day compared to the norm.

Excerpt:

Energy expenditure in physical activity was significantly lower in

NMD subjects than in control subjects and significantly lower in

women than in men. This sex difference disappeared when energy expenditure

in physical activity was adjusted for fat-free mass. The total

daily energy expenditure of women with NMD was 35% less than that of

control women. Likewise, the total daily energy expenditure of men with NMD was

20% less than that of control males. NMD women spent 74

45 min/day with heart rate in the “active” range, compared with 206

110 min/day for control women. Similarly, men with NMD spent 126

106 min/day and control men spent 248 127 min/day with heart rate in

the active range. NMD subjects also reported exercise at lower intensity levels

than did control subjects. Body fat in NMD subjects was inversely related to the

duration of exercise and fat-free mass.91

[Guest guest]

_http://www.bmi-calculator.net/bmr-calculator/_

(http://www.bmi-calculator.net/bmr-calculator/)

This is a calculator that Jillian 's recommended on her radio talk show

yesterday. She is also the female trainer on The Biggest Looser.

[Guest guest]

Hello!

Years ago, after I would exercise, I would get a burning sensation that

would last for a few days. Now that I don't have feeling in my legs, I

don't feel the burn after exercising. That somewhat bothers me because I don't

know when I overdo it.

Kay

[Guest guest]

I asked Greg , M.D. and CMT expert at the U of Washington about this and

here is his reply:

" I think people with CMT overall burn less calories due to the weakness and less

muscle mass but probably burn more calories for a given task because it is

harder for them " .

Gretchen

[Guest guest]

Doesn't that figure. Oh well, we work harder anyway!

Dawn