WHAT IS POST POLIO SYNDROME
Post Polio Syndrome is a poorly understood condition that can affect people who have had polio in the past.
Polio is a viral infection that used to be common in the UK, but is now rare.
Most people who had Polio would have fought off the infection without even realising they were infected.
Some people with Polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have either gone away over the following weeks or months, or remained the same for years afterwards.
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Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.
SYMPTOMS OF POST POLIO SYNDROME
Post Polio Syndrome can include a wide range of symptoms that develop gradually over time, including:
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persistent fatigue (extreme tiredness)
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muscle weakness
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shrinking muscles
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muscle and joint pain
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The condition can have a significant impact on everyday life, making it very difficult to get around and carry out certain tasks and activities. The symptoms tend to get gradually worse over many years, but this happens very slowly and treatment may help slow it down further.
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Post Polio Syndrome is rarely life-threatening, although some people develop breathing and swallowing difficulties that can lead to serious problems, such as chest infections.
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WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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The condition has become more common in the UK in recent years, because of the high number of Polio cases that occurred during the 1940s and 1950s, before routine vaccination was introduced. It's estimated that there are around 120,000 people living in the UK who survived Polio when they were younger. Some of these have, or will develop, Post Polio Syndrome.
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It's not known exactly how many Polio survivors are or will be affected by Post Polio Syndrome. Estimates vary from as low as 15% to as high as 80%.
WHAT CAUSES POST-POLIO SYNDROME?
The exact cause of post Polio Syndrome is unclear. It's not known whether anything can be done to prevent it.
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The leading theory is that it's the result of the gradual deterioration of nerve cells in the spinal cord (motor neurones) that were damaged by the Polio virus. This would explain why the condition can take years to appear.
Post Polio Syndrome isn't contagious. The theory that the Polio virus may lie dormant in your body, causing Post Polio Syndrome when it becomes reactivated at a later stage, has been disproven.
It's not clear why only some people who've had polio develop Post Polio Syndrome. Those who had severe Polio when they were younger may be more likely to develop the condition.
Contacts us: 0800 043 1935
Email us: info@britishpolio.org.uk
Polio Questions and Answers
Got a Question? Then get an answer.
We’ve got the answers to questions raised by polio survivors across the UK
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If you have a question you'd like answered let us know - email info@britishpolio.org.uk
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For additional information about polio and vaccinations, go to the NHS website https://www.nhs.uk/conditions/polio/
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The catch up schedule for incomplete immunisation can be found on the GOV.UK website https://www.gov.uk/government/publications/vaccination-of-individuals-with-uncertain-or-incomplete-immunisation-status
Medical disclaimer
The purpose of this Q&A webpage is for information only. The British Polio Fellowship disclaims all liability for any claims, losses, damages, costs and expenses incurred as a result of reliance on this information. It is not a substitute for advice from your doctor, physiotherapist or other health care professional
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QUESTION: What vaccines are available across the world today?
ANSWER: There are two types of vaccine that can prevent polio. Inactivated poliovirus vaccine, or IPV, is given as an injection in the leg or arm, depending on the patient’s age. Only IPV has been used in the UK since 2004.
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Oral poliovirus vaccine, or OPV, is still used throughout much of the world. OPV is no longer authorised or administered in the UK because of its potential to cause vaccine-derived poliovirus. The case of the samples found in sewage samples suggests that the virus may have originated in a location where the oral vaccine is administered, outside the UK.
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QUESTION: What is wild-type polio and what is vaccine-derived polio? ?
ANSWER: Wild-type polio is the naturally occurring form of the virus. However, some people can become infected from a weakened strain of the virus that was used to make the oral polio vaccine early on. Most countries, including the UK, immunise children using a vaccine made from a form of the virus that is no longer alive.
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Vaccine-derived polio can emerge if the weakened live virus contained in OPV, shed by vaccinated children, is allowed to circulate in under-immunised populations for long enough to genetically revert to a version that causes paralysis. Cases of vaccine-derived polio are not caused by a child receiving the polio vaccine.
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QUESTION: As a polio survivor, who didn't have a vaccine as I had the disease, would it be possible to catch polio again and should I ask for a vaccine?
ANSWER: The risk of you contracting polio today is very low and certainly significantly lower than it was in the 1950s. It would be wrong however to suggest there was no risk. There are three strains of the polio virus and any immunity will only work against the strain you originally contracted. The vaccine gives us the best protection against all strains of the polio virus.
Following the recent detection of the vaccine-associated polio virus in sewage samples, UK health officials have insisted the risk to the population is low, but if you want to put your mind at ease speak to your GP surgery.
QUESTION: I know some people who are very keen wild swimmers. Should these swimmers be thinking about having a polio booster to protect themselves?
ANSWER: The chances of catching polio in the UK from a lake or river with contaminated water is extremely low. However, if these people are not vaccinated and they are worried, they should contact their GP surgery for advice.
QUESTION: Six years ago, I went on the Polio Management course The neurologist who spoke said that the vaccine lasts 10 years. Does that still hold true?
ANSWER: You need a total of five doses of the polio vaccines to build up and keep your immunity. The first three doses of the polio-containing vaccine is the primary course and are given a month apart. The fourth dose is the first booster and is given five years after the completion of the primary course. The fifth dose is the second booster and is given 10 years after the first booster.
Further boosters for those who remain in the UK are unnecessary. You may need a booster if 10 or more years have elapsed from your second booster, and you are travelling to a high polo risk country. Nonetheless, you may happen to receive a booster just because you needed a dose of tetanus vaccine, because the vaccine for adults we have in the UK is a Tetanus/Diphtheria/Polio combined vaccine.
QUESTION: When we were using live vaccines in this country, they used to vaccinate the baby & the mum. I met a dad who had changed his baby's' nappy & caught polio - he was severely affected.
ANSWER: The childhood vaccination programme began in the UK in the 1950s and covered whooping cough and polio. An inactivated (killed) polio vaccine (IPV) was introduced in 1956 but replaced by a live attenuated oral polio vaccine in 1962. Since 2004, the UK has used an IPV, which provides strong protection against the disease polio. Any person who is not vaccinated against polio and is likely to come into contact with the polio virus will be at risk. In this case, if the father was not vaccinated and the baby had been given the oral vaccine (1962-2004) it would shed the weakened live virus used in the vaccine, in its faeces for several weeks, thereby putting the father at risk.
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QUESTION: The news about polio virus found in London came as a surprise. How does that affect us PPS people?
ANSWER: Anyone who has not had the polio vaccine, regardless of whether they have had polio, is considered unimmunised to all three polio virus strains. However, you should consider the risk of contracting polio in the UK today. It is significantly lower than it was in the 1950s. The vaccine would give you the best protection against all strains of the polio virus, but the level of probability that you will contract it again is low, even with the recent detection of the virus.
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QUESTION: Will GPs now start listening to us with PPS health issues?
ANSWER: When the vaccine-associated polio virus was detected in sewage a few weeks ago, health officials insisted the risk to the population was low, but doctors and medical professionals were put on alert. This meant they have had to learn a little more about polio and the symptoms to watch out for. The press coverage has also raised awareness of polio and on Saturday 11 July there was an article in the Times newspaper about the late effects of polio and Post-Polio Syndrome. All has all helped the Fellowship get the message out to healthcare professionals and we continue to develop a Healthcare Pathway for polio survivors to give members a tool when they need a diagnosis or on-going treatment.
There seems to be a lot of scare mongering going on now in the media, making people behave like hypochondriacs with OCD. Covid started an anxiety pandemic.
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QUESTION: Is physiotherapy useful for a polio survivor or could it cause further harm?
ANSWER: Physiotherapy (physio) cannot treat and influence the areas with polio-related weakness that developed years ago. Therefore, physio is not effective in treating the areas with established effects of the polio beyond that established weakness pattern. But physio is in some cases useful to treat and manage newer weakness or generalised strength or endurance loss. Particularly if its related to disuse or a new injury or the long-term effects of polio.
Physio is much more likely to be ineffective, than cause harm. This would be particularly in the situation when the exercise prescribed hasn’t been well thought through, and is too difficult for the person to achieve. Well prescribed, well thought through home exercise plans, that are tailored to the person's capabilities, and have taken account of the person's life style, function, mobility and other factors such as fatigue can be helpful in maintaining and in some case increasing strength and endurance. It is highly unlikely to cause harm, but might flare up symptoms if over ambitious.
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