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Overlapping Syndromes, Post-Polio and ME/CFS: An open letter from Mia Farrow

  [ 74 votes ]   [ 2 Comments ]
By Mia Farrow • www.ProHealth.com • July 3, 2013

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Editor's Comment: There are nearly 1.6 million polio survivors in the U.S., most of whom contracted polio in the 1950s and are now seniors. Because the poliovirus, a member of the enterovirus family, caused extensive damage to the nervous systems of polio victims, the symptoms can be as varied as those of ME/CFS. Like ME/CFS, these symptoms can also persist for decades.

Dr. Richard L. Bruno has studied and treated nearly 6,000 polio survivors and is the world's leading expert on Post-Polio Sequelae (PPS). Among his publications, Dr. Bruno has written a remarkable book about the overlap between PPS and ME/CFS entitled, "The Polio Paradox: Understanding and Treating 'Post-Polio Syndrome' and Chronic Fatigue" (published in June 2002 by Warner Books). Dr. Bruno's insightful book makes for informative reading, whether you have PPS or ME/CFS.

Below is a letter written by the actress Mia Farrow, who was stricken by polio at age nine, and her son, Thaddeus, who was paralyzed by polio at age twelve.

For more information, please visit the Post-Polio Institute.

Many thanks to Sheila J. Harris for calling ProHealth's attention to PPS.

Source: Post-Polio Institute

By Mia Farrow

POST-POLIO SYNDROME: AN OPEN LETTER 

WHAT ARE POST-POLIO SEQUELAE?

Post-Polio Sequelae (PPS, Post-Polio Syndrome, The Late Effects of Poliomyelitis) are the unexpected and often disabling symptoms -- overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, as well as difficulty swallowing and breathing -- that occur about 35 years after the poliovirus attack in 75% of paralytic and 40% of ''non-paralytic'' polio survivors. There are about 2 million North American polio survivors and 20 million polio survivors worldwide. The existence of PPS has been verified by articles in many medical journals, including The Journal of the American Medical Association, the American Journal of Physical Medicine and Rehabilitation and The New England Journal of Medicine.

WHAT CAUSES PPS?

PPS are caused by decades of ''overuse abuse.'' The poliovirus damaged 95% of brain stem and spinal cord motor neurons, killing at least 50%. Virtually every muscle in the body was affected by polio, as were brain activating neurons that keep the brain awake and focus attention. Although damaged, the remaining neurons compensated by sending out ''sprouts,'' like extra telephone lines, to activate muscles that were orphaned when their neurons were killed. These over sprouted, poliovirus-damaged neurons are now failing and dying from overuse, causing muscle weakness and fatigue. Overuse of weakened muscles causes muscle and joint pain, as well as difficulty with breathing and swallowing.

HOW ARE PPS DIAGNOSED?

There is no diagnostic test for PPS, including the electromyogram (EMG). PPS are diagnosed by excluding all other possible causes for new symptoms, including abnormal breathing and muscle twitching that commonly disturb polio survivors' sleep, a slow thyroid and anemia. Other neurological or muscle diseases are almost never the cause of PPS symptoms.

ARE PPS LIFE-THREATENING?

No. But because of damaged brain activating neurons polio survivors are extremely sensitive to, and need lower doses of, gas and intravenous anesthetics and sedative medication. Polio survivors can have difficulty waking from anesthesia and can have breathing and swallowing problems, even when given a local dental anesthetic.

IS PPS A PROGRESSIVE DISEASE?

PPS is neither progressive nor a disease. PPS is caused by the body tiring of doing too much work with too few poliovirus - damaged, oversprouted neurons. However, polio survivors with untreated muscle weakness were found to lose about 7% of their remaining, overworked motor neurons each year.

IS THERE TREATMENT FOR PPS?

Yes. Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.

ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?

No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

IS TREATMENT FOR PPS EFFECTIVE?

Yes. The worst case is that PPS symptoms plateau when polio survivors stop overuse abuse. Most polio survivors have significant decreases in fatigue, weakness and pain once they start taking care of themselves and any sleep disorders are treated. However, because of emotionally painful past experiences related to having a disability, many polio survivors have great difficulty caring for themselves, slowing down and especially with "looking disabled" by asking for help and using assistive devices.

WHAT CAN DOCTORS, FAMILY, AND FRIENDS DO TO HELP?

Polio survivors have spent their lives trying to act and look ''normal.'' Using a brace they discarded in childhood and reducing overly-full daily schedules is frightening and difficult. So, friends and family need to be supportive of life-style changes, accept survivors' physical limitations and any new assistive devices. Most importantly, friends and family need to be willing to take on taxing physical tasks that polio survivors may be able to do but should not do. Doctors, friends and family need to know about the cause and treatment of PPS and listen when polio survivors need to talk about how they feel about PPS and lifestyle changes. But friends and family shouldn't take control of polio survivors' lives. Neither gentle reminders nor well-meant nagging will force polio survivors to eat breakfast, use a cane or rest between activities. Polio survivors need to be responsible for caring for their own bodies and ask for help when they need it.

Whether you had polio or not, please COPY and MAIL this letter to your doctors. With your help every doctor will learn about the cause and treatment of PPS and give polio survivors the care we so desperately need. Thank you!

Signed, Mia Farrow, polio survivor and Thaddeus Farrow, polio survivor


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DISCUSS THIS ARTICLE   (2 existing comments) Post a Comment 


Post-Polio
Posted by: NaBubs
Jul 22, 2013
My mother had polio in 1946. Seven years later she had
4 more children; the two closest to the polio both have
CFS as well as a granddaughter.

I first heard about the connection in National Organization
meetings in Portland, Oregon in 1989/1990. At that time the physicians found 40% of people with CFS had a parent, or sibling who had had polio. This idea was dropped. I am glad to see some connection being made. Both have impacted our family greatly.

At that time I had CFS for 15 years. I was lucky to hear
presentations by Dr. Paul Cheney and Dr. Jay Goldstein.

Thank you Mia for bringing our attention to this.
Reply Reply

Had CFs for 35yrs.
Posted by: libby4u2
Nov 4, 2013
I'd just like to say, I have no family members that had Polio, but I have read that where there was an outbreak of Poilio, the people who got CFS where Immune from Polio, so yes i did have Coksacki B virus6, a viruse in the polio family, I got rid of it maybe 10 yrs into disease..pain all over got better, took German drops..Homeopathic..

and eventualy I got rid of the difficulty swallowing..

but I think allot of Mitro damage came about over the years..take CoQ10 and Aycetal L Carnatine,

Nada, Magesum, and Vit C, w/biflaviods, B vits, Methy B, and active Folate 5MTHR to keep my liver pathway open..methylation pathway, had detox , twice and got thru it..and will have to stay on the rest of my life..I take adrenal support, and l-trypohane for sleep and melatonin..seritonin,

I try and stay off of sugar , drink more water, and have an allergy diet to foods..

I do not have Fibromyalgia, thanks God this rubics cube has been enough..got it when it was called Epstien bar, I had that too, a red herring to a weakened Immune system, and yeast over growth..that I take oregano, and garlic oil, but not everyday or will lose it, have to rotate foods..

i have tried every type of desetization I could, and will be open..but none have worked..I'm try MSM, again..it's a good antiinflammatory..and now Turmeric by the teaspoon, good for fibrin, and anti-inflamatory, also I take acidolfolis several times a week like about 4..milk free..I don't drink alcohol, or smoke, and rest often..sleep as much as I need, but it came with a price,no children, or husband..for 35yrs..If I stayed I'd be dead..he was an abuser, emotionally, physically, and a sex addict..could not say no to any women, really fat ugly, didn't matter, it's not about that. it a damaged mind..won't go into it.. I took allot of Vit C IV up to 60 grams with extra calcium, and pushers, I found a Dr. here that does these too..I have went once, in Paridise Vally AZ,

will make an appoinment soon, and start the longway to stablization..Good Luck to you..
Reply Reply
 
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