Please forward to your local newsletter editor

Not from Tennessee? You may not know the name Steve Cohen. If you don’t, write it down. Because, if you’re a polio survivor anywhere in these the United States, freshman Democratic Representative and polio survivor Stephen Cohen has just become your Congressman.

“Delayed gratification,” was Cohen’s reply when I asked how he felt about winning. “I’m excited about going to Washington, where I’ve wanted to be my entire life.”

Cohen has been trying to get to DC for forty years. At sixteen, he applied to be a Congressional page. “Over the years, I applied to be a Congressional intern, a government lawyer, and for jobs in Democratic administrations.” Cohen was never hired. He also lost a 1996 Congressional bid.

But, although Washington was always on his mind, Cohen was working hard in Tennessee. A practicing lawyer, Cohen was elected to served as a Shelby County commissioner, where he helped to create “The Med,” a community-funded regional hospital. Cohen was elected to the Tennessee State Senate in 1982, where he served for twenty-four years and supported expanding healthcare access, voting rights and the medical use of marijuana.

Some of Cohen’s passion for public service and health care can be related to polio, which he had at age five in under particularly disturbing circumstances. “My father was a pediatrician, participating in the 1954 Salk vaccine trials. The protocol was to give vaccine to second graders, like my brother Martin, who got the shot. My father thought about taking some vaccine home to give to me. He didn’t do it.”

Cohen isn’t sure why his father withheld the vaccine. One notion is that his father thought there was a small chance Cohen could get polio from the vaccine. “The other story is that my father didn’t give me the vaccine because it wasn’t right, my not being in the study group. I got polio in fall of ‘54, an ironic situation.”

Cohen was hospitalized in isolation and then in a rehabilitation facility for about 3 months. “My left leg and back were affected.” He got the usual treatment -- hot packs, water therapy and PT -- and uused crutches for all of first grade. “I wore a cast sophomore year in high school to stretch my achilles tendon, which didn’t work. So, I had tendon lengthening surgery my junior year.”

Cohen is one of not even a handful of polio survivors in the public eye who admits to having Post-Polio Sequelae. “I limp more than I used to. The past year, when I’m standing, I feel like I’m going to lose my balance.”

Cohen also says he gets more tired than he used to. “But, I drive myself. I go way beyond warp, and I always have.” Based on the theory of conserving to preserve poliovirus-damaged neurons, Cohen says, “I probably took five to seven years off my leg during the campaign, because I was going every minute. I was hustling like when I was 20 year-old!”

But, Cohen knows what he has to do now. “Take two rest periods, sit when you can and save your neurons... which is the opposite of what I’ve always been thinking: Exercise, Exercise, Exercise.” A PT had given Cohen exercises -- muscle resistance, quad strengthening by squatting and balancing on one foot -- which he hasn’t done.

What’s more, Cohen was planning to manage his PPS even before he was sworn in. He asked for a ground floor suite in the House office building closest to the Capitol, right next to the escalator going to the subway that travels to the Capitol building. Cohen is also thinking of getting a Segway.

Cohen is already planning to help polio survivors and promote polio vaccination during 2007, declared by Congress as “The Year of Polio Awareness.” He has already talked to Rhode Island Representative and quad Jim Langevin, who asked Cohen to join the Disability Caucus with another polio survivor, Missouri Congressman Ike Skelton.

“Polio is part of my life. I want to do whatever I can to help polio survivors and encourage vaccination in Africa and in America. I am a testimonial to what vaccination could do.”

Delayed gratification and persistence. A winning combination for one polio survivor from Tennessee and 1.63 million polio survivors across the US.

I have been taking a statin drug to lower my cholesterol for several years. I recently started to have muscle pain in both arms and went to my doctor. He did blood tests and said the statin wasn’t causing the pain. But, he stopped the drug and, after a few days, the pain went away. Was the statin causing the pain or was it a coincidence?

Problems with cholesterol lowering drugs in polio survivors redux...again!

I’ve written two columns about cholesterol-lowering drugs potentially causing unique problems in polio survivors. The first column was published five years ago. The buzz in the post-polio community then was that rhabdomyolysis – a very serious condition where kidney and muscle tissues breakdown – occurred more frequently in polio survivors who take statins, the then newish cholesterol-lowering drugs. There have been no specific studies of cholesterol-lowering drugs in polio survivors, but there seemed to be no reason polio survivors would be more prone to rhabdomyolysis. Only about one-half of 1% of anyone who takes a statin, such as Lipitor, develops rhabdomyolysis, which can indeed cause muscle pain (usually in the calves), muscle weakness and possibly even kidney failure. With rhabdomyolysis, the enzyme creatine phosphokinase (CK, also called CPK) is released as muscle breaks down, CK sometimes increasing to

more than ten times the normal limit.

You should be aware that polio survivors can have an elevated CK without taking a statin. Two studies have found that 40% of polio survivors had abnormally elevated CK, with men having significantly higher CK than did women. In one

study, CK increased with the number of steps polio survivors walked in a day. In 50 Post-Polio Institute patients who were not taking statins, 21% had an abnormally elevated CK of about 225, which is one-third higher than normal, but not ten times higher. Still, an elevated CK may mean that polio survivors are making their muscles work too hard and causing the fibers to break down, but isn’t evidence of rhabdomyolysis.

Regardless, your CK was normal and you had arm muscle pain -- not calf pain -- that went away when you stopped the statin. Drug companies are now reporting that statins can cause muscle pain anywhere in the body, not just in the calves, without causing muscle breakdown or elevating CK. An exception is Zocor, which, although it can cause rhabdomyolysis, is reported by its manufacturer to cause muscle pain no more frequently than in those taking placebo.

Newer cholesterol-lowering drugs, the fibrates (Tricor and Lopid), also can cause rhabdomyolysis, elevated CK and “diffuse muscle pain, tenderness and weakness.” Even one of the oldest cholesterol-lowering drugs, the bile-acid sequestrant Welcol, is reported to cause muscle pain in 2% of patients versus none of those on placebo. What’s more, the cholesterol lowering B vitamin, Niacin, has also been reported to cause “pain,” although no more frequently than in those taking a placebo.

The good news is that the newest cholesterol-lowering drug, Zetia, is said to produce “no excess” rhabdomyolysis or increase in CK, and produced only slightly more (.04%) muscle pain than did placebo. Whatever drug you chose with your doctor, remember that rhabdomyolysis and muscle pain are more likely if you’re taking a combination of cholesterol-lowering drugs, calcium channel blockers, immune system inhibitors, certain antibiotics or antifungal drugs, have kidney disease, diabetes, a slow thyroid or drink more than a quart of grapefruit juice a day. If you’re taking a cholesterol-lowering drug and feel muscle pain, even if you’ve been on the medication for a while, stop the drug immediately and call your doctor.

Also, remember that there is more to managing cholesterol than taking a pill. Reducing saturated fat and eating foods high in soluble fiber -- such as cereal grains, beans, peas, legumes, fruits and vegetables -- can help lower

triglycerides and the "bad" low-density cholesterol (LDL) while raising the "good" high-density (HDL) cholesterol. It is also recommended that you lose weight, decrease stress, treat high blood pressure, stop smoking and have a five-ounce glass of wine with dinner. By following these suggestions and The Post-Polio Institute “Diet” (that recommends eating more protein, especially at breakfast) and reducing carbs and portion size -- you can lose weight, fuel your neurons to feel less fatigue and muscle weakness, while keeping your plumbing clear of cholesterol.

I read that you don't recommend exercise for polio survivors who are getting weaker. But if I stop exercising and do nothing, won't I lose muscle tone, get flabby and become deconditioned and become weaker still?

You're asking a good question but are using buzzwords that Americans hear on infomercials. It's vital that polio survivors understand what the research really says about exercise for newly weakened muscles and know the definitions of "muscle tone" and "deconditioned."

We never tell polio survivors to "do nothing." Both The Post-Polio Institute and Warm Springs long-term follow-up studies find the same thing. All PPS symptoms, fatigue, pain and muscle weakness, decrease when polio survivors stop exercising and follow The Golden Rule: If anything causes fatigue, weakness or pain, DON'T DO IT! (Or do much less of it.)

Unfortunately, those who recommend strengthening exercise to polio survivors quote from the conclusions of a half-dozen small studies of leg muscle strengthening, apparently without having read them critically. The studies' conclusions say that exercise programs "lead to significant gains in strength." However, when you look at the responses of individual subjects the "significant gains in strength" are hard to find. Just over half of the studies’ subjects had an increase in upper leg muscle strength of about 26%. One quarter had no change in strength while 21% actually had a decrease in strength of about 10%. So almost as often as not exercise either had no effect or actually decreased muscle strength.

What's more, only two studies asked whether exercise affected polio survivors' fatigue and their ability to function in their daily lives. In one study, strength increased by 36% but muscle fatigue also increased by 21%. In the other study, although muscle strength increased by 30%, there was no improvement in polio survivors' ability to do daily activities, and muscle fatigue increased as much as 300%! You have to ask what good comes from any small percentage increase in muscle strength that is not related to improved functional ability and that actually increases muscle fatigue more than strength.

And what of "muscle "tone"? Most people think that muscle tone means muscles that are firm and have a nice shape. Muscle tone actually means that muscle fibers are ready to contract. Muscle tone is lost when motor neurons are damaged and can't turn on muscle fibers. Loss of tone can happen when polio survivors exercise too much and muscles become weaker when poliovirus-damaged motor neurons fail. Remember, PPS researcher Alan McComas found that polio survivors who have muscle weakness lose at least 7% of their motor neurons each year (see PPS Forum June 2001). This is why he concluded that "polio survivors should not engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking."

Polio survivors' muscles get smaller lose tone if they're overused and the motor neurons that turn on the muscle fibers die. Arms and legs get flabby because of increased fat deposits, not a loss of muscle tone. Exercise does burn fat and at first causes muscles to increase in size. But polio survivors don't want bigger muscle fibers because they "further stress metabolically damaged neurons that are already overworking." The best way to prevent flabby arms and legs is to stop overusing and abusing your motor neurons and to follow the higher protein, low fat and lower carb Post-Polio Diet (see PPS Forum July, 2002).

And what does "deconditioned" mean? Many polio survivors believe that there are only two ways to live: overusing and abusing or being a couch potato and becoming "deconditioned." Deconditioning is something that happens when astronauts live in space or you put someone to bed for weeks, removing the pull of gravity and causing a decrease in blood volume and blood pressure. Deconditioning can only happen if polio survivors never leave the couch, not if they take two daily rest breaks on the couch, take a ninety minute nap, stop strengthening exercising or use a power wheelchair.

However, polio survivors may need to "condition" their hearts, especially if they have had a heart attack. Cardiopulmonary conditioning" uses exercise to strengthen the heart muscle (which was not affected by polio) and make it work more efficiently. However, there is no benefit to running on a treadmill or riding a bicycle to exercise the heart if you thereby stress and kill off poliovirus-damaged motor neurons. Many polio survivors can do heart conditioning by using their less affected limbs, usually their arms, in a carefully monitored program of paced and non-fatiguing exercise (see PPS Forum May 2001).

CHECK WITH YOUR DOCTOR BEFORE CHANGING OR STARTING ANY DIET!

"Breakfast? Sorry, don't have the time. In the morning there's too much to do, like showering and dressing and getting to work. I grab a cup of coffee (or two or three) and maybe a donut at work..."

"Lunch? Don't think so. I'm still catching up from my late start in morning. I grab a cup of coffee (or two or three) and maybe wolf down half a Big Mac..."

"Dinner? I'm either too tired or hungry as Patton's Third Army. I either defrost a piece of pizza and drag myself into bed or eat everything that isn't nailed down!

"So why am I totally exhausted but can't stop gaining weight?"

Polio Survivors vs. Breakfast. Americans are not very good at taking care of themselves. American's with disabilities are no better, and maybe a little worse, at self-care because it takes so much time to do things non-disabled folk do in a flash, like showering and dressing. There's hardly any time or energy left for planning meals, shopping, cooking . . . or even eating.

One group of people with disabilities shows the consequences of poor eating habits: North America's 1.8 million polio survivors. Nearly 76 percent of polio survivors are experience Post-Polio Sequelae (PPS). PPS are requiring polio

survivors to use new assistive devices or aids they discarded years ago, like braces, canes, crutches, wheelchairs and scooters, to slow down and to rest during the day. The problem is, polio survivors are Type A, hard working, pressured, perfectionistic super-achievers, who have pushed themselves beyond their physical limits and allow no time for self-indulgent luxuries, like food. Polio survivors don't want to slow down or rest, not only because they're afraid if they are less Type A people won't like them, but also because they are afraid of gaining weight if they become more sedentary. But they shouldn't be afraid. Food is good! Eating properly doesn't lead to becoming fat; it actually reduces PPS symptoms.

Dr. Susan Creange at The Post-Polio Institute discovered that polio survivors with blood sugar levels in the low normal range have as much difficulty paying attention and concentrating as would diabetics with blood sugars as low as if they had taken too much insulin. "Polio survivors' 'Type A diet' -- three cups of coffee for breakfast, skipping lunch and eating pizza for dinner -- is actually starving their nervous systems' and causing PPS symptoms," says Creange. The relationship between diet and PPS was seen in the 1998 National Post-Polio Survey: the less protein polio survivors had at breakfast the more severe were their daily weakness and fatigue.

Why do polio survivors function as if they have low blood sugar and report more symptoms when they don't eat protein at breakfast? Because polio survivors are running their nervous systems on "half a tank of gas." About 50 percent of all brain stem and motor neurons were killed decades ago by the poliovirus. What's worse, the metabolic apparatus, the internal power plant, of the neurons that survived the original poliovirus infection was severely damaged. So polio survivors have been running their full-tilt, Type A lives on half the normal number of neurons, neurons that are less able to use their only source of fuel, blood sugar. Dr. Creange found that even normal levels of blood sugar were not enough to fuel the remaining poliovirus-damaged, metabolically impaired neurons. And that's where protein at breakfast comes in.

Protein: The fuel that keeps on giving. Protein provides a long-lasting, "slow-release" supply of blood sugar

throughout the day. Polio survivors who had protein for breakfast reported less PPS symptoms because their fuel tank stayed full longer. They didn't need to "fill up" throughout the day with short-lasting sugar fixes, like soda or candy bars.

Mom was right about one thing: breakfast is the most important meal of the day. Since many polio survivors use more energy just getting showered and dressed than does a non-disabled person who runs a marathon, you need protein early and often. It's a good idea to eat breakfast before showering to "break your fast" and fill your tank before your neurons need the fuel. When we ask our post-polio patients to eat protein every day at breakfast, and have small, non-carbohydrate snacks throughout the day, they report an almost immediate reduction in nearly all the symptoms of PPS, especially fatigue. But the "protein power" diet is neither a fad nor a miracle: it's just common sense. No engine can be expected to run without fuel!

Our patients worry that using a wheelchair, resting more and having breakfast will cause them to get fat and have more PPS symptoms. A four-year follow-up study found that U.S. and Swedish polio survivors, living their typical Type A, "use it or loose it" lifestyles without using new assistive devices or resting, lost equal amounts of leg muscle strength, about 2% per year. However, when subjects from the two countries were looked at separately, the Swedes gained only 6 ounces per year, while the Americans gained over 2 pounds; that's 220% more weight! Although weight gain alone is not responsible for the progression of muscle weakness in polio survivors, it is Americans' high fat, Big Mac diet that causes them to get fat. You can fuel your neurons, feel stronger and less fatigued without gaining weight, if you choose low fat, low cholesterol sources of protein. In fact many of our patients, even as they slow down, sit down more, and use a scooter, lose weight (about a pound per week) if they eat more protein, reduce portion size and limit carbohydrates.

We aren't recommending one of those "all protein, no carbohydrate" diets. We aren't recommending a "diet" at all, but a method for eating healthy everyday. We suggest 16 grams of protein at breakfast; that's about 1/4 of the daily protein requirement (70 grams) for a 150-pound person. (Always check with your doctor, especially if you have kidney problems, before changing your diet and ask to have your cholesterol measured at your yearly check up.)

Look at the list protein-rich foods and select different breakfasts so you can have a variety throughout the week. In general one ounce of meat or fish contains about 7 grams of protein: Remember, you want foods that have many more grams of protein than they do fat.

The Protein Power "Diet"

Great!

Cottage Cheese (Lite) (1 cup) = 28.0g Protein and 2.3g Fat

Salmon (3 ounces) = 17.0g Protein and 5.4g Fat

Yogurt (8 ounces) = 12.0g Protein and 4.0g Fat

Tofu (6 ounces) = 10.0g Protein and 5.9g Fat

Milk (8 ounces = 1 cup)

Skim Plus Milk = 11.0g Protein and 0g Fat

2% Milk = 8.0g Protein and 3.0g Fat

Soy Milk = 7.0g Protein and 5.0g Fat

2 Egg Whites = 6.8g Protein and 0g Fat

Bagel (Lenders) = 6.0g Protein and 1.4g Fat

Egg Beaters (1/4 cup) = 5.0g Protein and 0g Fat

Snack Bars:

MET-Rx

Fudge Brownie = 26g Protein and 2.5g Fat

Source One = 15.0g Protein and 3.0g Fat

GeniSoy Bar = 14.0g Protein and 3.5g Fat

Balance Bar = 14.0g Protein and 6.0g Fat

Cliff (Luna) Bar = 10.0g Protein and 5.0g Fat

Protein Drinks:

Boost High Protein = 15.0g Protein and 6.0g Fat

Met-Rx in 2% Milk = 46.0g Protein and 5.5g Fat

Designer Protein Powder in 2% Milk = 25.5g Protein and 3.0g Fat

Carnation Instant Breakfast in 2% Milk = 12.0g Protein and 3.0g Fat

Higher Fat:

Swiss Cheese (1 ounces) = 8.1g Protein and 7.8g Fat

Lite 'n' Lively Cheese (1 ounces) = 6.4g Protein and 4.3g Fat

Hard Boiled Egg = 6.1g Protein and 5.6g Fat

Cream Cheese (Lite) (1 ounces) = 2.9g Protein and 4.7g Fat

Peanut Butter (1 TBS) = 3.5g Protein and 4.0g Fat

Lower Protein:

Quaker Life = 5.2g Protein and 1.8g Fat

English Muffin = 4.5g Protein and 1.1g Fat

Oatmeal (1 package) = 4.4g Protein and 1.7g Fat

Cheerios (1 1/2 cups = 1 oz) = 4.3g Protein and 1.8g Fat

Shredded Wheat (1 ounces) = 3.1g Protein and 0.6g Fat

Total (1 cup) = 2.8g Protein and 0.6g Fat

Not Good:

Egg McMuffin = 17.0g Protein and 32.0g Fat

Bacon (3 strips) = 5.8g Protein and 9.4g Fat

Coffee = 0.1g Protein and 0.0g Fat

POLIO SURVIVOR'S POWER BREAKFASTS:

12 minute breakfast: 2 hard boiled eggs (12 g) and an English Muffin (4.5 g)

8 minute breakfast: 3 scrambled egg whites (10 g) and a bagel (6 g)

6 minute breakfast: Toasted bagel (6 g), lite cream cheese (3 g) and 1 glass 2% milk (8 g)

4 minute breakfast: Yogurt (12 g) and 1 ounces of low-fat cheese (6 g)

2 minute breakfast: 1/2 cup low-fat cottage cheese (14 g)

________________________________________________________________

T'N'T: Tips and Techniques for Polio Survivors

by Dr. Richard L. Bruno

Recently I had a fever with muscle and chest pain. The only abnormal blood tests showed high C-reactive protein and high creatine kinase. My blood pressure and cholesterol are normal, I have never smoked, and I'm thin. Because of the chest pain I had an angiogram, which was normal. Could high CRP and high CK be related to PPS?

C-reactive protein is a blood marker for inflammation somewhere in the body. High CRP can be seen with type 2 diabetes, autoimmune diseases and cancers. Could inflammation somewhere in your body, as indicated by your elevated CRP, be related to PPS? Fifty consecutive patients evaluated at The Post-Polio Institute had CRP measured. The patients were on average 59 years old and 55% were women. Thirteen percent had an elevated CRP, 66% of

whom were men. CRP was on average nearly three times the normal value. However, there was no significant difference between those with high and normal CRP on self-ratings of daily fatigue, difficulty with self-care or ability to perform activities inside or outside of the home. So, there is no evidence that elevated CRP or inflammation is related to PPS, either to post-polio fatigue or difficulty in functioning.

Recent studies have found that elevated CRP is related to having a heart attack or stroke. The theory is that a bacterial or viral infection (although definitely not a poliovirus infection) somehow inflames arteries and causes them to clog. Our 1985 National Survey found no more heart disease or high blood pressure in polio survivors than in the general

population. But two studies found that 5% more male post-polio patients had abnormally elevated cholesterol as compared to the general population. In one of the studies, only 33% of those with high cholesterol had been given a

cholesterol screening test by their doctor and not even 25% were on cholesterol-lowering medications, like the statin drugs such as Lipitor, Pravachol and Zocor. This is not good, since reducing cholesterol reduces heart attack risk. What's more, research has shown that taking statins to reduce cholesterol can also lower CRP and may thereby increase survival even after having a first heart attack.

Statin drugs provide a connection between CRP and CK--in polio survivors. CK is an enzyme released when muscle is damaged. One half of one percent of anyone taking a statin develops muscle breakdown, which causes muscle

pain (especially in the calves), muscle weakness and an increase in CK. Even without muscle breakdown or an elevated CK, some polio survivors report muscle pain or weakness when taking a statin, usually one of the older statins like Lipitor. And polio survivors can have an elevated CK without taking a statin. Two studies found that 40% of polio survivors had abnormally elevated CK, with men having significantly higher CK than did women. In one study, CK increased with the number of steps polio survivors walked in a day. In our fifty Post-Polio Institute patients, 21% had

abnormally elevated CK levels (on average about 33% higher than normal) with men also having higher CK than did women. But, as with CRP, there was no significant difference between those with high and normal CK on self-ratings

of daily fatigue, difficulty with self-care or the ability to perform activities inside or outside of the home. However, an elevated CK may mean that polio survivors are making their muscles work too hard and are causing them to break down.

So, neither CRP nor CK is related to fatigue or loss of functional abilities in polio survivors. However, all polio survivors need to have their cholesterol and CRP measured to assess heart disease risk. And since an elevated CK indicates muscle breakdown, either from taking a statin or from muscle overuse, polio survivors should have CK measured before taking a statin. If you are worried about possible muscle weakness or breakdown with the statins, or the newer cholesterol-lowering drugs like Zetia and Vytorin, ask your doctor about using older medications like slow-acting niacin or bile acid sequestrants. Besides medication, polio survivors need to eat high fiber foods, reduce saturated fat, treat high blood pressure and stop smoking to keep their tickers ticking.

“People who survive polio in childhood will not suffer further effects later in life,” say US researchers. That was the headline in the newspaper.

Are we making up our muscle weakness, fatigue and pain? Is Post-Polio Sequelae all in our minds?

No, PPS is not in your mind. But, let’s start at the beginning, 1987, when Mayo Clinic researchers began a study of 46 polio survivors. The 46 were not a random sample of the 300 survivors of paralytic polio in Olmstead County, Minnesota from 1935 to 1960, but were “representative” -- in terms of the number of limbs involved and severity of polio, “bulbar” involvement and using a ventilator, age at polio, current age, years since polio, and gender – but not because they had PPS or “ongoing symptoms.”

Muscle strength was measured subjectively by manual muscle testing in 27 muscles (including face, tongue, diaphragm, arm, hand and leg muscles) to calculate a strange measure called the “Neurologic Disability Score” (NDS).

The NDS is scored from “0,” normal muscle strength, to “4,” a muscle that is totally paralyzed. I say the NDS is strange because it doesn’t make much sense in the real world. A polio survivor with mild weakness in the jaw, face and neck muscles, moderate weakness in the abdominal muscles and in one toe, would get the same NDS score as a polio survivor who had both thigh muscles totally paralyzed. Muscle strength around the elbows, knees and ankles was measured objectively using a machine, and hand and finger dexterity were measured using standardized tests. The number of remaining motor units -- the motor neurons available to run the muscles -- were measured using an EMG.

Cut to 2006. In an issue of the obscure Journal of the Peripheral Nervous System, the Mayo researchers published a 15- year follow-up of 38 of the 46 original subjects. Now, 15 years later, 82% subjects reported “progressive muscle weakness,” had an 18% decrease in muscle strength on the NDS and lost 45% of their remaining motor neurons.

The authors state that “a normal age- and gender-matched control group” -- in which they should have measured both muscle strength and remaining motor neurons -– “was not included,” and therefore “one cannot reliably compare the

changes in the polio group with those in a normal again population.”

But, their lack of a control group didn’t stop them from concluding that polio survivors “did not age any differently than a normal population” because they lost a “normal” number of motor neurons. Thus, the authors concluded that “the most likely cause” for “progressive muscle weakness” and the 18% decrease in muscle strength ”in our polio survivors is aging alone.”

Somehow, when the media got hold of the Mayo press release about the study, they focused only on the “normal” loss of motor neurons and the headlines became, “People who survive polio in childhood will not suffer further effects later in life.”

Of all the problems with this study, this biggest is the assumption that the death of a “normal” number of motor neurons in polio survivors is, well, normal. These researchers apparently aren’t aware that David Bodian discovered in 1949 that the poliovirus killed on average 50% of motor neurons, and that you had to lose at least 60% to have any muscle weakness, let alone paralysis. So, if polio survivors start out with one-half the “normal” number of motor neurons, the loss of an additional 45% would mean that have lost 73% of their motor neurons over 15 years, which is hardly normal, more than enough to cause “progressive muscle weakness” and an 18% decrease in muscle strength. Inexplicably, the Mayo researchers acknowledge, but then ignore, their not having a matched non-polio control group and their own findings of progressive muscle weakness in their post-polio subjects. Apparently, at the Mayo Clinic, polio survivors are merely the sum of their dying motor neurons.

I would argue with the researchers that polio survivors are absolutely not merely the sum of their dying motor neurons, that their methods are faulty, their logic is flawed and their conclusions are unfounded. But, I don’t have to argue with the researchers. They argue with themselves. Next month -- the rest off the story.

Last month, I described the upset caused by the publication of a Mayo Clinic 2006 press release and paper describing a 15-year follow-up study of 38 polio survivors that generated the media headline, “People who survive polio in childhood will not suffer further effects later in life.” In spite of admittedly failing to include a control group of non-polio survivors of the same age, post-polio subjects were said to lose a “normal” number of motor neurons over 15

years, that is 45%. Because of that “normal” loss of neurons, the authors concluded that post-polio subjects’ reports of progressive muscle weakness and a measured 18% decrease in muscle strength were cause by “aging alone” and that polio survivors therefore “did not age any differently than a normal population.”

What the Mayo press release and paper didn’t tell you was that the 2006 article was the last of three articles by the same authors. The first paper was published in March 2005 in the journal, Neurology. That paper also noted the

18% increase in muscle weakness on subjective muscle strength tests and their 45% loss of motor neurons. But, also reported were the results of quantitative tests of muscle strength, measured objectively by machine, and hand and finger dexterity measured using standardized tests. Those tests found polio survivors had an overall decrease in muscle strength of 21%: 8% in the thighs, 14% in the muscles the lift the feet, 25% in the upper arms, and 31% in grip strength. What’s more, subjects had a 25% decrease in hand dexterity and a 55% decrease in finger dexterity.

The authors admitted, “We did not include a normal control group.” But, as opposed to the 2006 article, the March 2005 paper stated, “In the absence of a normal control population, the effects of aging… cannot be commented on. How the changes identified in our polio (subjects) compare with those of a normal aging population remains unknown.” The study did not conclude that “the decline in our polio survivors is aging alone” or that “people who survive polio in childhood will not suffer further effects later in life.” In fact, the authors stated “The syndrome of progressive weakness late after paralytic poliomyelitis was quite common.”

Then, in September 2005, the authors published a second study of the same subjects in Neurology, this time describing “adaptive equipment use.” In 1987, 13% reported using a brace or “gait aid” (cane or crutch), 16% had been forced to change jobs and 13% had modified their homes due to muscle weakness. Fifteen years later, an additional 12% had to modify their homes or move because of weakness and there had been a 100% increase in subjects using a brace or aid. What’s more, forty percent of those originally using just brace or aid are now using wheelchairs.

The 2005 studies, presenting objective findings of progressive muscle weakness, loss of function and increased assistive device use, certainly do not support the 2006 declaration that polio survivors “will not suffer further effects later in life.” Why did the authors erase their own findings of muscle weakness and loss of ability from the 2006 paper and change their conclusion from how polio survivors bodies’ “compare with those of a normal aging population remains unknown” to “our polio survivors did not age any differently than a normal population?” I haven’t a clue. And I don’t think it’s important to know. What is important is the fact that PPS are real and are not “normal”

aging. Studies of thousands of polio survivors – not just “the Mayo 38” – have shown that.

It’s also important, in this age of the 24 hour news cycle and the Internet, that we become extremely cautious when medical research is “published” via press release and the media. Medical “facts” change in the media from week to week. Chocolate causes obesity, then it fights cancer; a daily glass of wine causes alcoholism, then it prevents heart disease. For PPS -- for or any condition -- we need to do the hard work of reading the actual research studies, not just newspaper articles or press releases, to understand what’s really happening to our bodies and know how to care for ourselves.