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Latest update on the vaccine from our Medical Advisors

”There has been no rise in cases of GBS, and if vaccines caused GBS at a frequency of 1:100000 or more, we would have seen a doubling in cases. If the rate were 1 per million doses, we might only just see it. Therefore, the cases we are seeing are those that would probably occur anyway.

Recurrence of GBS is extremely rare, and so even if there was an association with the COVID vaccine, the chance of a second episode would be almost zero. Because the benefits of vaccine far outweigh any risk of a recurrence of GBS it makes no sense not to have the second dose. Without it, and subsequent boosters, immunity will wane and greatly so in comparison to the fully vaccinated population, leaving one exposed to the risks of COVID and long COVID 12 months hence. Given that the death rate from COVID amongst the unvaccinated population is +/- 1 per thousand, not being fully vaccinated is taking a huge risk.”

 

Neuroscientists at UCL have found no significant association between COVID-19 and the potentially paralysing and sometimes fatal neurological condition Guillain-Barré syndrome

https://www.eurekalert.org/pub_releases/2020-12/ucl-nab121120.php

 

Vaccinations – your questions answered 

Vaccines in current use are thoroughly tested and are considered amongst the safest medicines available. Unless you know for a fact that your GBS/CIDP was triggered by a vaccination (which studies repeatedly show to be extremely rare) the advice for people who have had GBS or are living with a chronic variant such as CIDP is the same as for anyone else as they are no more or less likely to have an adverse reaction from a vaccination.

Some doctors will advise their patients not to have a vaccination within 6-12 months of having had Guillain-Barré syndrome. However, this advice is based on nothing more than an abundance of caution as no study has ever found a causal association between vaccination and a recurrence of GBS.

The advice for people who have had GBS is the same as for anyone else regarding vaccinations. GBS is a single event acute condition that is very unlikely to recur; it doesn’t ‘relapse’ and someone who has had GBS is unlikely to get it again (recurrence rate is estimated to be around 2-5%, but is increasingly believed to be significantly lower than this). Even if someone developed GBS within 6 weeks following a vaccination, it is extremely unlikely that they will suffer a recurrence if they have the same vaccine again in future, and it is important that the risks of not being vaccinated, especially against something as potentially life-threatening as COVID-19, are fully understood. It is vital that as many people as possible get vaccinated against COVID-19, as this is the only way to achieve ‘herd immunity’ and protect the most vulnerable amongst us.

The flu vaccine is also considered safe and is recommended for people with CIDP, or another of the chronic variants, as chronic neurological conditions fall within the ‘at risk’ category. If you are being treated with immunoglobulins via IVIg or SubCut, you may be less likely to get viral infections, but the best protection is still to have the vaccination. If you’re being treated with corticosteroids, or other immuno-suppressant medication, you may be more prone to viral infections, and a serious case of flu could put you at considerable risk, so it would make sense to protect yourself from flu by having a vaccination.

The risk of the seasonal flu jab triggering GBS or CIDP is far lower than the risk from flu itself. Under normal circumstances, most people don’t need a flu jab, because for them, flu is inconvenient but not life-threatening. However, if you are in an at-risk group, or you live or work closely with people for whom flu can cause severe and even life-threatening complications, then the advice is to be vaccinated, as this is the most effective way to protect yourself against getting flu, and passing it on to others.  The flu vaccination programme for 2021/22 is being extended beyond those traditionally considered to be at risk, to minimise the spread and to protect as many people as possible from the associated danger, so it’s worthwhile asking your GP or pharmacist about getting vaccinated, even if you wouldn’t normally be considered at risk.

In the document the national influenza immunisation programme 2020 to 2021 Public Health England states that ‘Previous GBS is not a contraindication to influenza vaccination. A UK study found that there was no association between GBS and influenza vaccines although there was a strong association between GBS and influenza-like illness. A causal relationship between immunisation with influenza vaccine and GBS has not been established.’

This is further supported by the Medicines & Healthcare products Regulatory Agency (MHRA) which states; ‘The balance of epidemiological evidence is not sufficient to confirm that currently used influenza vaccines are causally associated with the development of GBS. As GBS also occurs naturally in the vaccinated population, and particularly because flu-like illness is a known risk factor for GBS, a number of cases are reported each year in temporal association with vaccination. This does not mean the vaccine was the cause.

Recent data supports the findings made in previous studies that an influenza vaccination may trigger GBS in fewer than 1 in 1,000,000 people vaccinated. There were approximately 14,000,000 people vaccinated in the UK during 2019/20 and there were 11 reports submitted through the yellow card scheme for the same period. It should be understood that these may be true adverse reactions, or they may be due to concurrent diagnosed or undiagnosed illness, other medicines or they may be purely co-incidental events that would have occurred anyway in the absence of therapy. Based on current evidence, the MHRA findings are that these reports do not indicate a causal relationship between influenza vaccine and GBS.’

GAIN would also add that this is supported by independent research showing colds and flu-like illnesses to be known triggers for GBS. Because vaccines stimulate the immune system, theoretically this might exacerbate or lead to the appearance of an autoimmune disease, but it is not possible to identify those for whom a vaccine might act as a trigger, or why. The seasonal flu vaccination is considered to be a very low risk trigger, with approximately 1 case of GBS triggered per 1,000,000 vaccinations as opposed to 1 case of GBS per 60,000 cases of flu.

 

On vaccinations in general, our Medical Advisory Board advises:

  • DO have all travel vaccines that are suggested for the particular area you are travelling to.
  • DO have all vaccines that are recommended. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, pneumovax, HIF, COVID-19, etc.  There are monitoring programmes ongoing so a link would be picked up if it occurred
  • COVID-19 is a more serious disease than influenza and more easily caught. There is no reason why most people affected by GBS or CIDP shouldn’t receive any of the COVID-19 vaccines
  • DON’T have a vaccine if you are extremely allergic to any of the ingredients
  • DON’T have any vaccinations that are not necessary

Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it.

Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP. There have been neurological side effects reported on the Yellow Card Scheme. It is likely that these are a temporal association and are the subject of on-going investigations.  Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link; https://coronavirus-yellowcard.mhra.gov.uk/

 

Follow this link to the NHS website for advice on vaccinations in general; https://www.nhs.uk/conditions/vaccinations/why-vaccination-is-safe-and-important/

 

Newsletter archive (issues 1-10)

COVID19 newsletter issue 10 04.09.2020

COVID19 newsletter issue 9 11.06.2020

COVID19 newsletter issue 8 15.05.2020

COVID19 newsletter issue 7 08.05.2020

COVID19 newsletter issue 6 01.05.2020

COVID19 newsletter issue 5 24.04.2020

COVID19 newsletter issue 4 17.04.2020

COVID19 newsletter issue 3 10.04.2020

COVID19 newsletter issue 2 03.04.2020

COVID19 newsletter issue 1 27.03.2020

COVID-19 (coronavirus)

Posted on 04/03/2020 | Updated: 25/08/2020

We have been asked whether people who have been affected by Guillain-Barré syndrome, CIDP or one of the associated inflammatory neuropathies are more at risk from coronavirus COVID-19. The following information is a general guideline only. If you have other health conditions to take into consideration, please seek medical guidance.

GBS / acute variants

The advice for people who have had GBS is the same as for anyone else. A common misconception is that people who have had GBS have a weakened or damaged immune system – this isn’t the case, and you are no more or less likely to contract the coronavirus or to be adversely affected by it, unless you have other underlying health conditions, or are considered more vulnerable due to your age, etc.

CIDP / chronic variants

For those of you living with CIDP, or another of the chronic variants, you may have a suppressed immune system, depending on your treatment. Receiving immunoglobulin, either intravenously or subcutaneously, does not suppress your immune system, nor does plasmapheresis (aka plasma exchange or plex). However, if you take steroids, or other immunosuppressant drugs, then you are considered to be more vulnerable. If you are unsure, ask your GP or neurologist

Further information online

For up to date information on current guidelines where you live, please visit the relevant government website:
England
https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance
Scotland
https://www.gov.scot/coronavirus-covid-19/
Wales
https://gov.wales/coronavirus
Northern Ireland
https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19
Republic of Ireland
https://www.gov.ie/en/campaigns/c36c85-covid-19-coronavirus/

Check if you have coronavirus symptoms

https://111.nhs.uk/covid-19

Book a test online if you have coronavirus symptoms

https://www.nhs.uk/conditions/coronavirus-covid-19/testing-and-tracing/get-a-test-to-check-if-you-have-coronavirus/

Local restrictions: areas with an outbreak of coronavirus/COVID-19

https://www.gov.uk/government/collections/local-restrictions-areas-with-an-outbreak-of-coronavirus-covid-19

Advice from the NHS, including how the most vulnerable should continue to protect themselves

https://www.nhs.uk/conditions/coronavirus-covid-19/

BBC News online

https://www.bbc.co.uk/news/coronavirus

Coronavirus (COVID-19) UK data

https://coronavirus.data.gov.uk/

World Health Organisation map showing location and numbers of cases globally

https://covid19.who.int/

World Health Organisation questions and answers

https://www.who.int/emergencies/diseases/novel-coronavirus-2019/question-and-answers-hub/q-a-detail/q-a-coronaviruses

Advice from MIND regarding mental health and wellbeing during the pandemic

https://www.mind.org.uk/information-support/coronavirus/