In March 2020 Kathrin LaFaver, a neurologist in Chicago and I did a webinar with FND Hope to look at issues around what was, at that time, the new infection Covid-19. You can watch it here or on Youtube

Does COVID-19 cause FND?

In that webinar I said that it was very likely that a group of people would emerge who had developed FND after COVID-19. This is because one of the strongest risk factors for FND is ANY physical illness, ranging from mild viral illnesses, to life threatening infections. Physical injury and especially other neurological conditions like Epilepsy and MS are strong risk factors for developing FND.

As predicted there are a number of people who have FND after developing COVID-19. “Long Covid” has emerged as a name for a wide range of post-illness symptoms especially fatigue, poor concentration and pain. These are not specifically FND symptoms (which are things like paralysis, tremor or seizures), although cognitive symptoms occupy a grey zone.

Long Covid is very likely a mixture of many types of problem including:

1. Known long term complications of serious infectious illness and intensive care treatment.
2. Deterioration of an existing condition or vulnerability – for example older people who experience delirium during covid-19 which ‘tips the balance’ and leads to dementia.
3. Post-viral fatigue. there is a wide literature demonstrating that some people after infectious illnesses do have unusually long recoveries – eg months – which are a direct consequence of viral infection – at least initially.
4. Complications from Covid-19 such as stroke which are recognised in acutely ill patients.
5. Possibly some direct involvement in the brain in Covid-19. Lots of scientists are working on this
6. A functional disorder, including FND, emerging in the aftermath of an illless.

So, functional disorders or FND are only one of many reasons why people may be unwell after covid-19 infection. But they are an important one, especially if you consider how treatable the other things are on that list. I have certainly seen patients develop FND after Covid-19 but not any more than after similar illnesses.

Does having FND make me more likely to get COVID-19?

No. Long term studies of FND dont show that people with FND die of pneumonia more than the general population. If you are very disabled with FND to the point where you are mostly in bed, then, like any severe cause of disability, you may be more at risk of pneumonia.

If I have FND am I likely to feel worse or get “Long Covid” if I catch COVID-19?

The answer to this is probably yes, more than average, although it wouldnt be the case in everyone. Ive seen patients with FND get worse after COVID, and Ive also seen patients with FND whose illness hasnt changed at all with COVID.

The kinds of symptoms seen in Long COvid are similar to those experienced in FND. In many ways many people with FND already had the same experience as people with long covid, before covid-19 was a thing. We dont have good data about the effect of covid-19 generally on FND.

How has lockdown affected people with FND?

The experience of lockdown has been very difficult for many people for all sorts of reasons, and that has worsened FND in some people. Many of my patients have also told me that lockdown was, in a way, a relief. They were already ‘locked down’ before and everyone else suddenly joined them in that restriction. There was a sense, by some, that the playing field had been levelled just a little bit. People who have seizures or poor mobility may find it difficult to go outside and so lockdowns were anxiety reducing for some. Conversely, as things normalise the pressure to be out and about again can be stressful for some people with FND. We await better data but its very much a mixed picture based on conversations Ive had with patients and other FND specialists around the world.

Should I have the COVID-19 vaccine? Im worried that could make my FND worse?

There is no evidence that the covid-19 vaccines are in any way more risky for people with FND than the general population. Covid-19 is a potentially dangerous illness that could cause your or your friends and family harm. It is also associated with a risk of worsening your own health if you have FND.

I do understand why some people with FND would be concerned about a vaccine. They may not like needles, or be concerned about a relapse because of the arm ache and viral symptoms that can sometimes go with a vaccine. You can find out the general risks of vaccines from your usual sources of information.

Some people who have contacted me have said they have become really concerned about a serious relapse of FND after the vaccine. When concerns become this strong then there is a strong chance of a NOCEBO response.

Nocebo is the opposite of placebo. Its when expectation of a serious problem makes that more likely to happen. Every human being is susceptible to nocebo and placebo. People with FND are probably inherently no more susceptible than anyone else. But when you have neurological symptoms then its understandable that you might be worried.

https://en.wikipedia.org/wiki/Nocebo

Nocebo actually induces quite powerful changes in the nervous system and could certainly worsen FND – some of the same pathways that go wrong in FND are probably shared by the pathways which mediate placebo and nocebo responses.

So no one should be forced to have a vaccine if they cant overcome their fears about the effect it will have. Perhaps thinking about and understanding the nocebo response will help you in your decision about the covid vaccine.

Can FND be triggered for the first time by a Covid vaccine?

Since January 2020 there have been reports on social media of people either diagnosed as having FND, or experiencing symptoms with typical features of FND on posted video.

To those of us who work with people who have FND there is nothing surprising about this. FND is commonly triggered by minor physical injury or other illnesses. When people have a vaccine, of many types, they often have a sore arm, and can feel unwell. This is enough to trigger FND in someone who was previously well. It doesn’t mean that the vaccine has caused neurological damage.

Of course we do need proper research about neurological complications of any vaccine, and that research goes on all the time. Doctors have picked up other rare complications of the covid vaccine this way and identified that they are more directly related.

So FND after a vaccine is just as genuine as any other type of FND, but it would this is a reason not to have the vaccine. It would be like avoiding getting in a car because a car accident can sometimes trigger FND, or avoiding a panic attack (not really possible) because that can also trigger FND. I can understand why people who were well before the vaccine and now have FND would feel differently but they have almost certainly just fallen victim to a random series of unlucky events following the experience of the vaccine which is neither the vaccine’s fault, nor their own.

The FND society have published a statement about vaccines and FND which covers this topic. There have been subsequent publications in academic journals about it including one in JAMA Neurology – one of the leading neurology journals in the world, and another in the Journal of Clinical Neuropsychiatry and Neurociences.

The Sun newspaper in the UK published an article which explored this issue too for a general readership, drawing on some of these resources.

Canadian broadcaster CTV also did a piece on this which contains some useful interviews with Beth Pardo, who had FND after her vaccine. Ive posted this here because I think much of it is really helpful. There are some parts that are NOT accurate, which have been highlighted by the FND advocate on twitter @FNDrecovery. For example FND is described as “not a real physical condition” – that is wrong – as it does arise from the brain and in a real way. Also FND is not always treatable, as many people with FND know, although Im glad that Beth was able to improve with treatment.