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
COVID 19 VACCINATION INFORMATION 23/02/2021
COVID-19
The lockdown and the vaccination program have meant a large decrease in the numbers getting COVID-19. Hospital admissions, serious illness and death are also thankfully greatly reduced. Numbers, however, are still high enough that we all still need to take precautions as set out by the UK Government. This applies even if you have been vaccinated.
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Vaccine update
The vaccine rollout has also gone well with people over the age of 65 being called now. Three recent studies published this week confirm that high protection is given against COVID-19 and serious disease even in older people.
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'Polio Syndrome' is now included in priority clinical risk group six under chronic neurological disease. This means that you should be able to be given the vaccine now.
When talking to the GP about getting the vaccine, they may do a search on a database called the SNOMED system. They will only find it if they use the title 'Post Polio Syndrome', or one of these terms.
- Post Polio muscular atrophy
- Post Polio progressive muscular atrophy
- Progressive muscular atrophy following poliomyelitis
- Post Polio syndrome
Our thanks to the Polio Survivors Network for this information.
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If needed when talking to your GP, the list for priority clinical risk group six is in the green book on 'Immunisation against Infectious Disease' Chapter 14a table 3 page10
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"Chronic neurological disease Stroke, transient ischemic attack (TIA). Conditions in which respiratory function may be compromised due to neurological disease (e.g. polio syndrome sufferers). This includes individuals with cerebral palsy, severe or profound learning disabilities, Down’s Syndrome, multiple sclerosis, epilepsy, dementia, Parkinson’s disease, motor neuron disease and related or similar conditions; or hereditary and degenerative disease of the nervous system or muscles; or severe neurological disability."
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You can also asked to be vaccinated now if you are the main carer of an elderly or disabled person from the Joint Committee on Vaccination and Immunisation (JCVI); see here under the heading persons with underlying health conditions (quoted below)
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"Other groups at higher risk, including those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should also be offered vaccination alongside these groups."
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Thanks to all who filled in our COVID-19 survey - it is also in the recent Bulletin -please send in your experiences. It will take some time to go through them, but hopefully we will have a report on findings in the next Bulletin.
COVID 19 VACCINATION INFORMATION 14/01/2021
Be aware that information on COVID-19 and vaccines is changing daily. Your own GP can give you up to date advice on whether a vaccine is right for you based on your personal health circumstances. You will also have a clinical assessment when you attend for vaccination at any of the centers. This information has been published on 14/01/2021 please ensure you are following our most up to date information. The purpose of this publication 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
From January 2021, the good news is that there are now three vaccines approved for use in the UK and the NHS has started a large scale vaccination program across the country. This aims to offer a first dose of vaccine to everyone in the top four priority groups by the 15th February; many of our members will be in this first phase, but not all. The vaccinations will take place in hospital hubs, local vaccination services led by GP teams, and large scale vaccination centers.
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Covid-19 vaccine roll out and polio
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The trials to date have reported very few safety issues and no evidence to suggest that people who have had polio or have PPS should not take the COVID 19 vaccine if offered. Most people in the UK who had polio are over 65 and are at higher risk of serious illness from COVID-19, so the clinical experts advising the BPF believe that they should have the vaccine unless advised otherwise by their health care professional.
The NHS are offering the vaccine first to people who live in care homes and care home workers, to people over 80 yrs, and to health and social care workers.
Younger women should be aware of the advice for women who are pregnant which has been updated. This says there is no known risk associated with giving non-live vaccines during pregnancy. However, the COVID-19 vaccines have not been tested yet in pregnancy. "As a matter of caution, COVID-19 vaccine is therefore not routinely advised in pregnancy but there are some circumstances in which the potential benefits of vaccination are particularly important for pregnant women. This may include women who are at very high risk of catching the infection or those with certain medical conditions that put them at high risk of suffering serious complications from COVID-19 infection. In such circumstances, a woman may choose to have COVID-19 vaccine in pregnancy following a discussion with her doctor or nurse." (see link below)
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Does having had polio or the polio vaccine give immunity?
You may have heard reports suggesting that having had polio gives immunity to COVID-19 - this is not backed by any clinical evidence.
You may have also heard reports that the polio vaccine gives immunity - again, this has no clinical backing. (In fact, most people in the UK are given the polio vaccine , so if the polio vaccine did give immunity - there would have been no COVID 19 epidemic in the UK). What has been discussed is that receiving live vaccines might possibly give protection against other diseases, but this has not been proven. The World Health Organization does not recommend the live oral polio vaccine (OPV) for the prevention of COVID-19.
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Will I be given priority because I had polio?
Polio/PPS is not specifically on the list of conditions that is considered to make people clinically extremely vulnerable to COVID-19 and the BPF will continue to advocate for this to happen. However, members may be offered the vaccine sooner as they may fall in the priority vaccine list , such as is they live in a care home or are over 80yrs.
Some people who had polio will have significant respiratory (breathing) problems or other health conditions not related to polio which may make them clinically vulnerable or clinically extremely vulnerable. For advice on your individual suitability for or benefit from the vaccine, you should consult your GP ensuring they understand your polio and other medical history. They will be able to take into account your personal health risk and will have the latest information on the vaccine.
Will we still need to take precautions after being vaccinated?
The government advice still is in place to take precautions around 'Hands, Face, Space'. Even after the vaccine is rolled out, it will take time for an immune response to build up and for the NHS to determine how long the protection lasts. No vaccine is 100% effective and some people who have been vaccinated may be unaware that they are still susceptible to infection or spreading the virus.
The NHS advice is that after vaccination, everyone should continue to follow 'Hands, Face, Space' and everyone must continue to follow all the measures in place to reduce contact with the virus until advised otherwise by the government.
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If you are interested in publishing this information please contact kripen@britishpolio.org.uk
NHS information on https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine/
Information on safety of COVID-19 vaccines when given in pregnancy - https://www.gov.uk/government/publications/safety-of-covid-19-vaccines-when-given-in-pregnancy/the-safety-of-covid-19-vaccines-when-given-in-pregnancy
Guide for older adults - https://www.gov.uk/government/publications/covid-19-vaccination-guide-for-older-adults/covid-19-vaccination-guide-for-older-adults
Other sources: Joint Committee for Vaccine and Immunisation, the UK government website for information on priority groups, UK COVID-19 vaccines delivery plan - accessed 13/1/2021
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