Wednesday, February 13, 2008

Dr. Bruno: Parallels in CFS/FMS/Polio

Dr. Richard Bruno theorizes that CFS/ME/fibromyalgia and post-polio are the same condition. It has been known for decades that polio and myalgic encephalomyelitis traveled in side-by-side epidemics, and that those affected with ME were later found to be immune to polio. He observes, "If you had paralysis or muscle weakness, you certainly did have myelitis, an inflammation of the motor neurons in the spinal cord."

While Dr. Bruno admitted to me that it’s unlikely that those of us born after the polio vaccine became available in the mid-1950s had "polio", the fact is that the vaccine only protects against a few of the worst strains; it is possible that the virus that we had was one of the milder variants not covered by the vaccine. Of course, since polio had been eradicated in the US three decades earlier, no one ever thought to test me for polio, so we don’t know what virus I had ... only what viruses I tested negative for. (He theorizes that when polio was conquered, it left a vacuum which was filled by another enterovirus; CFS researchers have found an enterovirus.)

While, obviously, I would recommend that the first book a new CFS patient reads is a CFS-specific book (and I put David Bell’s "Doctor’s Guide" at the top of that list; I recommend Devin Starlanyl’s books for a fibromyalgia primer), if you’ve read all the other literature and are looking for another viewpoint, Dr. Bruno’s "The Polio Paradox: What you need to know" is intriguing reading.

I come at this book from two perspectives: at about the time that I developed CFS, a friend was diagnosed with post-polio in arm muscles overused in propelling her wheelchair. The muscle weakness she describes in post-polio sounds a lot like what I describe in CFS; her medical experts nodded sagely and explained, mine told me what I was describing was "impossible". How can the same symptom be both "expected" and "impossible"?! Dr. Bruno recommends discarding the old "use it or lose it" philosophy and learn to "conserve to preserve." This has worked for me; I spent much of my career doing production typing – 100 pages a day – and then came home to do a couple hours of needlework, so, like my friend, it was my arm muscles that were overused. When I followed her doctors’ advice about setting limits on how much I used my hands/arms, it stopped the problems of ever-increasing weakness and late-day muscle failure.

Dr. Bruno describes PPS patients as "having new symptoms: overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing" and "brain fatigue", including word-finding difficulty. Sound familiar?

Molly, a patient, asks "Have you ever been so exhausted that eating a meal, let alone cooking it, simply wasn’t possible?" I see every CFS patient out there nodding in recognition, and every non-patient in total disbelief. That may be the best explanation of why calling what we have "fatigue" is the understatement of the millennium. But Dr. Bruno warns against taking pep pills; instead, for your own good, heed your body’s demand to rest.

Dr. Bruno was training in Columbia University’s Department of Rehabilitation Medicine, studying disorders of the autonomic nervous system when he dealt with a polio patient whose bad arm was always colder than his good arm. Intrigued, Dr. Bruno started researching further.

In his investigations, Dr. Bruno came on some startling information – the plan to award Disability benefits for post-polio was "shelved in favor of benefits for those with AIDS. Disability should not be an either-or proposition" and that the patients "reported 50% more Type A behavior on average than did nondisabled individuals." Three British researchers concluded that "highly motivated patients who pushed themselves beyond the competence of their damaged bodies were most likely to develop late-onset problems."

He observes that for most patients "it’s more important to appear normal ... to protect themselves from criticism and failure than it is to ... care for themselves." Just what some people have suggested about CFS: that it occurs in Type A people who cannot and will not stay home until they are completely recovered from the virus; I went back to work the day after I first sat up for an hour propped up with pillows. I pushed myself (I still do) to my limits (and sometimes beyond) because that’s the type of person I am, and I paid the price in the long run, and now take criticism for not pushing even further past my limits in order to continue to appear normal.

Pathologist David Bodian observes that the non-paralytic forms "may be associated with severe neuron damage in the spinalcord. [And] some with non-paralytic poliomyelitis do not have any damage in the spinal cord but have characteristic damage in the brain. ... [The virus] is capable of producing an encephalitis, with or without symptoms." Again, similarities with CFS. The Type II virus (documented in the 1948 Iceland outbreak of what is thought to be CFS, as well as by Dr. Sabin in Cleveland the year before) is least likely to cause paralysis but seems to damage the brain stem just above the spinal cord, while preventing infection by the high-virulence Type I virus. Coxsackie virus, which has been found in CFS patients, "can cause damage to the brain and spinal cord that is identical to polio." Dr. Bruno comments on viral proliferation in the throat; I often have throat problems just before I relapse. The evidence for the CFS/polio connection keeps mounting.

In 1934, a disease resembling the later "Iceland Disease" felled 150 doctors and nurses in the polio ward of Los Angeles General Hospital; identical symptoms were documented among 300 doctors and nurses at London’s Royal Free Hospital in 1955. At that time, infectious disease specialist Melvin Ramsey stopped calling it "atypical poliomyelitis" and started calling it "Myalgic Encephalomyelitis". Like polio, the symptoms included headache, pain, fever, and weakness. "Some ME patients reported fatigue, that they were ‘not as quick or incisive in thought’ as before their illness, ‘a decreased ability to learn, and a decline in their short-term memory’ that lasted for decades." Some patients never recovered. "Of more than a dozen ME outbreaks before the introduction of the polio vaccine in 1954, nine occurred during or immediately after outbreaks of polio, and several involved hospital staff who cared for polio patients." After the polio vaccine, "the number of ME cases went through the roof." Dr. Bruno’s theory is that nature abhors a vacuum, and when poliovirus was eliminated, another enterovirus filled the void; other doctors point out that the Sabin vaccine prevents only the 3 worst variants.

There is the fiction that if a test shows normal strength, there’s nothing wrong. However, "no manual muscle test measures your endurance, effort, or the time it takes for you to recover strength after activity." In both CFS and PPS, stamina is an issue, you "can do almost anything once." Dr. Bruno warns that every time patients "exhaust their motor neurons, they are doing damage that will eventually result in permanent weakness"; this push/crash roller coaster is another thing patients have in common. "The only cause of progressive muscle weakness is [patients] not taking care of themselves." Let me repeat that: you can avoid deterioration by honoring your limits. His advice is "if anything causes fatigue, weakness or pain, DON’T DO IT! (Or do much less of it.)" For both conditions, the recommendation is to do half the amount of work or exercise that triggers symptoms; I’m proof that you can maintain full strength with CFS, because I can still lift (though only once) the same amount I used to. "Deconditioning is one of the red herrings that doctors who know nothing ... try to feed you." (Another red herring is that your symptoms will disappear if you lose weight; research found no correlation between weight and any PPS symptom.)

Dr. Bruno observes that patients "were confronted by doctors’ ignorance about PPS, their disinterest and disdain. Many physicians dismissed new symptoms as psychosomatic. ... Even after the publication of scores of medical journal articles, international conferences, and acceptance of PPS by the American Medical Association ... [patients] are still being told by doctors that they’re lazy, crazy, fat, old or just plain lying," a situation which will sound familiar to CFS patients as well. Rather than admit that they don’t know what they’re talking about, doctors will throw out those red herrings like deconditioning, weight, depression, and prescribe exercise ... which is guaranteed to make you feel worse. Then you risk developing real depression, which he notes is triggered when patients "can no longer meet other people’s expectations and do what they think they ‘should’." It’s a result, not a cause, and the medical profession must take responsibility that sometimes the cause for the patient becoming depressed is their bullying the patient to do more than the patient is physically capable of.

He found 2/3 of patients reported muscle weakness was triggered by cold temperatures, and "specific triggers for their pain" including cold exposure, which explains why patients feel worse in winter. It is not, as some have suggested, Seasonal Affective Disorder: I used to live somewhere with very little difference in the length of the days, but certain months were cooler and damper, and those were the months I felt worse. He also tells the story of apatient who, like me, worked in an over-air-conditioned office, cold to the point that the staff complained, "She became weaker and more fatigued as her overtaxed, refrigerated motor neurons worked harder day after day to make her cold-stiffened muscles and joints move. Ultimately, enough of those overtaxed neurons failed and probably died under the cold-induced stress to cause permanent weakness." A nurse tells me the body works optimally at 76 degrees; although it may be tempting to save money by using less heating oil, be aware that you may cost yourself much more in the long run.

On my first reading, I thought it was ridiculous that Dr. Bruno felt it necessary to spell out that research has shown that pain can disturb sleep, yet, how many of my doctors missed that incredibly obvious nexus and refused me the pain pills that would have let me sleep?

Why do we have digestive problems? The vagus nerve contracts the muscles in your stomach, causing vomiting. This nerve also affects other autonomic functions. No less than Supreme Court Justice William O. Douglas said that exercise "made me feel faint; and sometimes I’d be sick at my stomach or get a severe headache." Dr. Bruno explains that a "spasm pushes on the vagus nerve, slows the heart, drops the blood pressure, and turns on the gut, causing nausea and maybe a feeling of faintness – all because the functioning of the vagus nerve is discombobulated." He warns that stretching toward the pain will make the spasm worse, so stretch only away from the side that hurts.

Now turn to p. 207, "subjects who had fainted even once reported significantly higher fatigue than those who had never fainted. And those who had fainted more than three times had the highest fatigue of all. This suggested to us that there is a relationship between fainting and fatigue – that damage to brain stem neurons controlling blood pressure, damage to those controlling heart rate, and damage to the brain activation neurons is related in anyone who has chronic fatigue, whether they've had polio or not." I’ve fainted dozens of times in my life.

In 1995, Peter Rowe found CFS patients have fatigue + blood pressure drop when they stand up, leading to the conclusion that "some CFS patients have lost the ability to regulate the size of their veins, just like polio survivors, allowing blood to pool and blood pressure to drop," probably due to brain stem neuron damage from a virus. I’d also refer you to Dr. Cheney’s comments on cardiac issues related to standing up. On that subject, Dr. Bruno poses the Cardiac Conundrum, what to do when "one indispensable muscle needs exercise while all the other muscles need rest?" and observes "arm exercise is more taxing on the heart and a more efficient form of heart exercise." However, in general "an exercise program is not required to prevent your muscles from turning to jelly." Physiatrist Jim Agre warns "For some persons, the performance of normal activities of daily living may require maximal effort, and additional exercise may lead to overuse problems." If you feel stronger on days you don’t exercise, your body is trying to tell you something. Listen to it. "Don’t stand when you can sit, and don’t sit when you can lie down."

Agre’s research found that polio patients who used pacing (resting for at least an equal length of time after working a short time) "could do 240 percent more work with fewer symptoms." Dr. Goudsmit’s research with CFS patients didn’t show quite as much success at increasing output, though it was successful at reducing symptoms.

Another intriguing finding is that patients tend to hypoglycemia. "The more challenging the mental task – like those difficult attention tests – the more sugar neurons need to function." Steroids make it even worse.

Numerous parallels between PPS/CFS/ME are listed on pages 285-287. There is no question in Dr. Bruno’s mind that they are physical, not emotional illnesses with "remarkable similarities". Both groups have white spots in brain neurons and less of the hormone ACTH, more prolactin and less dopamine, less growth hormone (which researchers believe to be the result, not the cause). "The symptoms of fatigue – in both polio survivors and CFS/ME patients – result from a virus damaging brain-activating neurons." Ten pages later, he also analyzes the parallels between PPS/CFS/fibromyalgia.

"Even more disturbing is that doctors choose to ignore more than eighty years of research indicating that ME, and its American cousin CFS, are very likely caused by one or more of the enteroviruses. More than polio survivors with PPS, those with ME and CFS have been dismissed as lazy, crazy, or outright liars by the medical community. Maybe it’s our Puritan heritage, but there are two symptoms by which people are not ‘allowed’ to be disabled: fatigue and pain."

"Just like polio survivors, those with CFS, ME and fibromyalgia have no more time to waste with doctors who don’t believe their conditions are real. ... It’s time doctors start looking at the cause ... from the brain up, instead of from the mind down, so that [patients] start getting help for their symptoms, instead of being blamed for them."

"How many PPS/CFS/fibromyalgia patients have been discarded by doctors who thought them to be lazy or faking when an anti-depressant didn’t cure their fatigue, or when physical therapy ... made weakness worse, not better? ... In this new millennium medicine must not be about doctors’ egos and their ability to ‘cure’ disease."

The message that has been sent is that "there is no disability that cannot be conquered" if patients try hard enough. "It is this ethic that allows doctors to reject patients whose conditions cannot be diagnosed with a blood test or an X-ray, to dismiss [them] as lazy or crazy." Unfortunately, there are some diseases for which we still have no cure, or even an effective treatment; the medical profession tries hard to sweep those under the rug, as well as to ignore the evidence that pushing some patients to rehab ever-harder will result in permanent disability.

Dr. Bruno notes that after reading his book "you now know more than any doctor you’re likely to meet"; this is too often the situation for CFS and fibromyalgia patients as well. "There is one thing we still don’t understand: why doctors and governments throughout the world refuse to acknowledge, let alone learn about and provide treatment."

5 comments:

calliopeva said...

Sorry Karen, but doctors these days don't "cure" diseases, unless it is something simple like chickenpox.  Now-a-days doctors only treat diseases, because that is how they are trained and that is what keep the big pharmacological companies happy and in business.   I am supposed to take a pill every day for the rest of my life to "treat" my blood pressure ( which would be considered normal, except that I have diabetes so I was told it needs to be lower than normal), or to "treat" my cholesterol ( same story, in non-diabetics my numbers would be considered ok) and of course to "treat" my diabetes. As long as I have to take these pills, why do research to CURE any of those  problems?  That would kill the cash cow.  This is why, I think, fibro is being treated more as a real disease- because someone came up with a pill and now they can start milking the fibro people.

Amazing that in spite of copius amounts of clinical evidence reguarding polio like enterovirus's some doctors are still blaming the patients.  Until their masters, the drug companies who give them kickbacks have a pill for them to push on ME sufferers I fear that this will be the case.

kmc528 said...

"Amazing that in spite of copius amounts of clinical evidence reguarding polio like enterovirus's some doctors are still blaming the patients."

The problem is, the initial virus looks like a basic flu, so most patients don't go to the doctor in the stage where it can be documented that they really did have a virus.  They go when the problems get to the chronic stage, when it's much harder to figure out what virus they had.  In my case, I had the virus in February, but didn't see a doctor till I relapsed end of November.

Since "most" viruses don't have long-lasting effects, he pooh-poohed the connection that I was still being affected by "the flu" I had almost 10 months earlier.  He had the convenient explanation that women want to be housewives, so he didn't need to look further for a reason for my symptoms because I was married.  (Just like the fool 13 years later didn't have to look for a reason because I was divorced.  What's wrong with the "logic" that the same symptoms are caused by being both married and divorced?)

In both cases, when confronted with the specialist/researcher's opinion that this was viral in nature, they continued to cling to the notion that viruses don't affect you that long, and asserted that I'd just kept doctor-shopping till I found someone who told me what I wanted to hear.  In both cases, they disputed the official word of a psych expert that I lacked the emotional component for a psych diagnosis, hoping to find someone who would say what *they* wanted to hear.  

MAC Angel said...

AMEN and "ditto"
22 years now and as they say
THIS Type A "is sick and tired of being sick and tired."

Katherine O'Connor said...

Fascinating. I watched the movie "Awakenings" over and over because I found I could relate to the patients on some levels. The being more active at night, being still. I went upstairs and I looked up encephemylitus (sp) Lethargica...and I remember thinking what if we have some sort of milder form of this, and because medicine doesn't give a damn about us either it won't be discovered.

CFS Facts said...

Why polio still hasn't been eradicated:
http://www.cnn.com/2012/07/27/health/polio-eradication-efforts/index.html?hpt=hp_c3