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.
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
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.
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.
WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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.
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.
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
CORONAVIRUS AND POLIO
The following guidance has been released by our Expert Panel in relation to Polio/PPS and the current outbreak of Covid-19
COVID-19 Update 11/05/2021:
Since the last update (23/052021), the vaccination rollout combined with the lockdown has reduced the level of infections and serious illness in the UK down to the same low level we had in August 2020. Over 35M people have had at least one dose of COVID-19 vaccine, and restrictions are slowly easing. This is all really good news.
Some things have emerged in recent months such as the possible link of rare blood clots+low platelets with viral vector vaccines such as the AstraZeneca and the Johnson & Johnson vaccines. Side effects such as these are reported using the MHRA Yellow Card system which anyone can fill in -
https://coronavirus-yellowcard.mhra.gov.uk/.
How much should we worry? The Joint Committee on Vaccination and Immunisation (JCVI) published their recommendation on 07/05/2021. the full statement is here - https://www.gov.uk/government/publications/use-of-the-astrazeneca-covid-19-vaccine-jcvi-statement-7- may-2021/use-of-the-astrazeneca-covid-19-azd1222-vaccine-updated-jcvi-statement-7-may-2021.
This says _
"There have been reports of extremely rare adverse events of concurrent thrombosis (blood clots) and thrombocytopenia (low platelet count) following vaccination with the first dose of AstraZeneca ChAdOx1 nCoV-19 vaccine (AZD1222). There have been no safety concerns identified for thrombosis/thrombocytopenia associated with the second dose of the AstraZeneca (AZD1222) vaccine, nor with other COVID-19 vaccines currently approved for use in the UK (Pfizer-BioNTech and Moderna)."
The available data "suggests there is a slightly higher incidence (number of cases per million doses of vaccine given) reported in the younger compared to older adult age groups" whereas the risk of serious illness from contracting COVID-19 increases with age.
The Yellow Card report summary to 28/4/2021 says "The estimated number of first doses of COVID-19 Vaccine AstraZeneca administered in the UK by 28 April was 22.6 million and the estimated number of second doses was 5.9 million." "The overall incidence of case reports of thromboembolic events with low platelets after first or unknown doses was 10.5 per million doses."
Compare this to 127,500 deaths in the UK population of 67M within 28 days of a positive test for COVID- 19.
It advises that people under 30 and unvaccinated adults between 30 and 39 who are not in a clinical priority group should be preferentially offered an alternative to the AstraZeneca vaccine. If the situation with COVID-19 infections or availability of the vaccines changes this advice may change.
There is no evidence that we know of that a polio survivor has more risk of these rare blood clots than anyone else or that any COVID vaccine is better or worse than any other if you have had polio.
The latest information from Public Health England (7/05/2021) based on the JCVI advice adds
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that people over 40 or with underlying medical conditions are at high risk of complications of COVID-19 should still receive any of the available vaccines.
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If you have already had a first dose of AZ vaccine without suffering this rare side effect you should complete the course. It gives a table of the current benefits and risks for different ages.
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/9842 55/PHE_12015_COVID-19_vaccination_and_blood_clotting_leaflet_v2.pdf
Feedback to BPF
Let us know about your experiences with COVID-19, lockdown and vaccination. There is very little information on the impact of these on polio survivors so your experience matters.
Other points:
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The JCVI has also issued new advice for pregnant and breast-feeding women. It advises that they should be offered the COVID-19 vaccine and are encouraged to discuss the risks and benefits with their clinician https://www.gov.uk/government/news/jcvi-issues-new-advice-on-covid-19-vaccination-for- pregnant-women
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The virus that causes COVID-19 is called SARS-CoV-2 (Severe Acute Respiratory Syndrome Coronavirus 2), COVID-19 is the disease, (COrona VIrus Disease 2019)
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The Association of British Neurologists guidance on vaccination for COVID-19 and neurological conditions 10/1/2021 https://cdn.ymaws.com/www.theabn.org/resource/collection/65C334C7-30FA- 45DB-93AA-74B3A3A20293/ABN_Guidance_on_COVID- 19_Vaccinations_for_people_with_neurological_conditions_9.1.21.pdf
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There is a very good, clear, general introduction to vaccines (not just COVID ones) by Chris Whitty on the Gresham College website which explains the history and the different types of vaccines https://www.gresham.ac.uk/lectures-and-events/vaccination
This Information was first published April 2020
In the last months the coronavirus (COVID-19) has emerged world-wide. This is a new virus that can affect your lungs and airways and cause significant illness. For most people, it will be quite mild, but as most polio survivors in the UK are over 70 years old they are more at risk of being severely ill if they contract coronavirus disease. Please be very careful to follow the government advice and stay safe.
As a community of people living with a long term condition, many polio survivors are asking questions about what it means for them. The expert panel produces advice on polio and PPS; on the coronavirus we recommend members follow the official government advice. This article summarises the latest NHS and government information at the time of writing (29th March 2020). It is not possible to reprint everything, but for our members who do not use the internet, this contains the main points.
For the more complete and the most recent information, the best websites are the NHS (https://www.nhs.uk/conditions/coronavirus-covid-19/), and the UK government (https://www.gov.uk/coronavirus). If you cannot access the internet, try and find a family member or friend who can as this is where the best information will be.
Polio and coronavirus
As polio survivors, we are not more likely to catch coronavirus disease, but as most people who had polio in the UK are over 70 years old, if they do catch the virus they are at increased risk of being severely ill. It is important that they be particularly careful about following the government advice and social distancing steps.
Polio survivors who had or currently have breathing muscle involvement are at higher risk if they contract any respiratory infection.
Underlying medical conditions can increase the risk of more serious illness; the list on the government website includes chronic respiratory disease, chronic heart, kidney or liver disease, chronic neurological conditions and being seriously overweight (BMI over 40).
The people considered to be at the very highest risk and extremely vulnerable are those with compromised immune systems or severe respiratory conditions; for example having had a solid organ transplant, certain types of cancer treatments, cystic fibrosis or severe COPD. People in this group are to be contacted by letter before the end of March. The additional advice for people in this group is to stay at home at all times (also called 'shielding').
We know of no evidence of polio survivors having weakened immune systems as a result of contracting polio.
So what to do:
• As the majority of our members are over 60 years old, and two thirds over 70, we are at higher risk from serious illness if we contract coronavirus. Therefore, we need to be particularly stringent in following the government and NHS advice
• If you think you have coronavirus (see box), to protect yourself and others, stay at home (self-isolate). The current advice is to stay at home for 7 days from the start of symptoms. On day 8 if you no longer have a fever, you are probably no longer infectious. To be cautious, wait at least 2 days after your temperature has settled. The cough can linger on for many weeks.
• If you live with someone who develops symptoms, you should self isolate for 14 days from the start of those symptoms in case you also become ill.
• If you don't have symptoms, the advice for everybody now is to stay at home except for food shopping, exercise, medical need or absolutely necessary work travel (see box). When out, follow the social distancing rules
o keep a distance of 6 feet from other people
• follow the guidance on handwashing and respiratory hygiene (see box)
• A small number of polio survivors will have severe respiratory difficulties or other conditions in the extremely vulnerable group. If you are in this group, you are strongly advised to stay at home at all times - if you haven't received the letter from the NHS to extremely vulnerable people by the 29th March 2020 or been contacted by your GP or hospital, or you think you fall into this category for other reasons, you should discuss your concerns with your GP or hospital clinician.
• People who are on NIV/BIPAP should contact their respiratory team for advice on cleaning their tubing, their level of risk or their need for shielding.
• Oddly, this a an unusual time where doing nothing (staying at home) will save lives
Stay sane - it is a very challenging time and coronavirus messages are everywhere, often with little new information. Perhaps watch only one new bulletin a day, in the evening with the fullest report. Keep in contact with friends and family, online, on the phone, or even letters!! Get fresh air and sunshine when you can, eat a healthy diet, and follow what accessible activity or exercise that keeps you mobile.
Ask for help if you need it - wise words from a polio colleague;
"I know how independent we polio disabled people like to be, but at this time it is important to remember that it is not a weakness to ask for help. In fact it takes courage and we all have courage which is how we survived polio. So please ask for help if you need it"
We know that many of our members were isolated and less mobile before this outbreak. Some may have difficulty getting shopping even with the special access hours in some shops. Local BPF groups have done amazing work over the years in their communities. This is now a time where local community is as important as national organisations. I am sure many are already working hard to help polio survivors in this new challenge. Are there any ideas you can share to others on checking on nearby polio survivors? Or to organise shopping or other support?
Stay well.
The most common symptoms of coronavirus - from NHS.uk
a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
To protect others, do not go to places like a GP surgery, pharmacy or hospital. Stay at home.
Use the 111 online coronavirus service to find out what to do. https://111.nhs.uk/covid-19/
Coronavirus (COVID-19): what you need to do - from gov.uk for everyone (29th March)
Stay at home
Only go outside for food, health reasons or essential work
• Stay 2 metres (6ft) away from other people
• Wash your hands as soon as you get home
• Anyone can spread the virus.
You should only leave the house for one of four reasons.
● Shopping for basic necessities, for example food and medicine, which must be as infrequent as
possible.
● One form of exercise a day, for example a run, walk, or cycle - alone or with members of your
household.
● Any medical need, or to provide care or to help a vulnerable person.
● Travelling to and from work, but only where this absolutely cannot be done from home.
Full guidance - https://www.gov.uk/coronavirus
Handwashing and respiratory hygiene
There are general principles you can follow to help prevent the spread of respiratory viruses, including:
• Washing your hands more often - with soap and water for at least 20 seconds or use a hand sanitiser. Key times: when you get home or into work, when you blow your nose, sneeze or cough, before eating or handling food, after using the toilet, after contact with pets, before and after providing routine care for another person who needs assistance
• avoid touching your eyes, nose, and mouth with unwashed hands
• avoid close contact with people who have symptoms
• cover your cough or sneeze with a tissue, then throw the tissue in a bin and wash your hands
• clean and disinfect frequently touched objects and surfaces in the home (tables, doorknobs, light switches, countertops, handles, desks, phones, keyboards, toilets, taps, and sinks, doorbells)
other things that might help
o The use of hand sanitisers is recommended when you cannot get access to running water and soap
o be cautious about deliveries as the virus can stay active on many surfaces for a long time- clean where possible, if you have space and it is not a trip hazard, leave them to one side for as long as you can, wash your hands after handling any newly delivered item
o Be kind to your hands - we are going to be washing them a lot and doing a great deal more cleaning - moisturise if they get dry or cracked to keep the skin in good health.