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If you would like to speak to others who have been affected by these conditions, then the GAIN Video Chat, held on the second Tuesday of every month at 2pm is the thing for you.  Sign up for the Starleaf App from your smart phone, tablet or computer, or if you prefer you can dial in on your home phone – just click here to join the meetings

Latest update on the vaccine from our Medical Advisors

There has been no rise in cases of GBS in January to March 2021.  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 it was related the chance of a second episode would be almost zero. And since it is unlikely that it is really a link and that the benefits of vaccine far outweigh any risk that would suggest the second dose probably should be given. Without it, immunity will wane and greatly so in comparison to the fully vaccinated population leaving one exposed to infection and Covid risks 12 months hence….. and given that’s a risk of death at +/- 1 per thousand they would suggest having it.

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

Vaccinations for Flu and COVID – 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 you are no more or less likely to have unwanted side effects from a vaccination.

As far as the COVID-19 vaccine is concerned, it is vital that as many people as possible get vaccinated as this is the only way to achieve ‘herd immunity’ and protect the most vulnerable amongst us.

Please see a copy of the Facebook post copied below on the seasonal flu vaccine for further information, and follow this link to the NHS website for advice on vaccinations in general;

Seasonal flu & COVID19 vaccine – Facebook post Sometimes people are advised by their doctor not to have a vaccination within 12 months of having had Guillain-Barré syndrome, as a precaution, so if your diagnosis was very recent, your doctor might advise you to give it a miss this year, unless you are in a group considered to be at high risk from flu.

Otherwise, 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 believed to be around 2-5%). The only caveat to this would be if you developed GBS within 6 weeks following a vaccination, in which case it would be wise to avoid that particular vaccine in the future (please note that the seasonal flu vaccine changes each year, depending on which strains are predicted by the WHO to be most prevalent:

The flu vaccine is also considered safe and is recommended for people with CIDP, or another of the chronic variants. 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 2020/21 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 side-effects, 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.

The advice is for everyone to have the COVID19 vaccine when it is offered, to limit the spread amongst the population as a whole, so protecting the most vulnerable.

On vaccinations in general, our Medical Advisory Board advises:

  • DON’T have a vaccine again which you received within 6 weeks before your GBS started.
  • DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to.
  • DO have all vaccines that are ‘necessary’. 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. No new links have been detected since the 1970s.
  • COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy requiring an Epipen. 

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;

Read our latest newsletters

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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:
Northern Ireland
Republic of Ireland

Check if you have coronavirus symptoms

Book a test online if you have coronavirus symptoms

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

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

BBC News online

Coronavirus (COVID-19) UK data

World Health Organisation map showing location and numbers of cases globally

World Health Organisation questions and answers

Advice from MIND regarding mental health and wellbeing during the pandemic