Fatigue

Wakey-wakey!

Asleep on the job again?

Perhaps you should get to bed a little earlier?

Why are you always having a go at me?

I'm doing my best but all you do is get

angry and shout at me.

I can't do this anymore.

Oh come on it's only one drink.

Look, none of us see you anymore.

Oh you know what; if you don't want to go then

that's your choice.

It may not be obvious, but my brain injury means

everything I do, think or feel

takes so much more effort than it used to.

It's as if my battery drains so much quicker

and it can affect my work, my home and my social life.

So today I'm going to talk specifically about fatigue in stroke because that is the research area that we're working in. Obviously, a lot of the things we're going to say apply across a wide range of people with different conditions.

There are really two things I want to do today. I want to tell you the facts, what we do know about fatigue and, actually, what we don't know. I also want to talk about some of the ways that people deal with their fatigue and discuss a little of the evidence around this.

The first thing to say is that the term fatigue has become much more commonly used in society than it ever was. Particularly since COVID, people tend to use this term when they mean that they're very tired, not that they're fatigued.

The problem with that, for people who actually have real clinical fatigue, is that sometimes there is an impression that they just don't try hard enough, or that they should simply push through this tiredness.

This is something that a lady said to us in a study. She worked in a room with other people. They complained that they had fatigue, but they were always able to finish their work. When she had fatigue, she had to stop and walk away. She felt that this made her look bad and that it wasn't fair.

And it absolutely isn't fair, because fatigue is different from being tired.

This is the definition that we use for fatigue after stroke and, let's be honest, it's a bit clunky. Basically, it covers the fact that fatigue is overwhelming and that it affects not just people physically, but also the way they think and their emotions.

I'm going to use a definition that I often use with my own patients, which really says three things about fatigue.

Firstly, it's chronic. People may use words such as "exhausted" and "wiped out".

Secondly, it's not related to what they've just done. Frankly, if you've just run a marathon, you could well be very tired. But for many people with fatigue, they feel as if they've not done very much and yet have an overwhelming need just to stop.

Finally, it often isn't relieved simply by resting.

Those are the main characteristics of what we're talking about when we discuss clinical fatigue.

Three things that I'm going to say to you are that:

Fatigue is one of the most distressing symptoms people experience after stroke.

People report that it's a major problem but don't know how to manage it.

Fatigue has now been identified as a priority area in stroke rehabilitation.

I'm showing you a very old reference because we've known about this for a long time. It's really only in recent years that we've decided this is something we need to tackle properly.

We've also known for quite some time that people report fatigue as a major problem, yet they don't know how to manage it.

Finally, fatigue has been identified as a priority area in stroke rehabilitation. If you think of the top ten priorities, fatigue is number four. We recognise that we need to do much more in this area.

It's a huge subject, but I'm just going to tell you a few things you need to know.

I'm going to do this as a bit of a quiz. You don't need to answer aloud. Just think of the answer in your head.

The first question is whether you think it is true or false that the incidence of fatigue after stroke is about 50%.

In other words, of all the people who have a stroke, do you think about 50% of them experience fatigue? Do you think that's too high, or too low?

Well, the answer is that we largely disagree on the exact numbers.

Some studies suggest about 25% of people experience fatigue. Other studies suggest 75%.

The differences arise because people define fatigue differently or measure it at different points after the stroke.

Generally, though, the literature agrees that around 50% of people experience fatigue, which is actually quite high.

So if you said 50%, you've already got a point.

An important thing to say is that fatigue changes over time. It's not a simple case of either having it or not having it.

Some people have fatigue early on. Others develop it later.

This is a study that we carried out where we followed people after they were discharged from hospital.

At six months, we looked at 109 people who had fatigue. Sixty-one already had fatigue early after their stroke, but for 48 people it was new fatigue.

Fatigue can emerge at different points in your recovery. It isn't static.

The next question is whether fatigue is linked to increased mortality.

By mortality, we mean your risk of dying younger or earlier than expected.

Do you think fatigue is linked to that, or does that sound rather far-fetched?

Well, the answer is actually true.

Before anyone panics, having fatigue does not mean you are going to die young.

The issue is that people who have fatigue generally can't participate as fully in rehabilitation. Because of that, they often don't make the recovery they otherwise could.

They may have more difficulties looking after themselves, moving around and maintaining fitness.

It is because of those factors that fatigue becomes linked with mortality.

That makes it quite a serious issue.

Another question I often get asked is whether statins are linked to fatigue.

True or false?

There are no convincing studies showing that statins are directly linked to fatigue.

To be fair, if you read most medication information leaflets, fatigue appears as a possible side effect of many medicines.

The important message is that if you suspect a medication is contributing to fatigue, talk to your doctor before stopping it.

What we do know comes from a very good study carried out in France.

That study found that it isn't specific drugs that are associated with fatigue but the number of drugs people are taking.

The phrase used is polypharmacy, which is simply a medical way of saying that someone is taking many medications.

If you're taking a large number of medications, it may be worth discussing a medication review with your doctor.

However, absolutely do not stop taking medications on your own.

So, based on current evidence, there is no clear link between statins specifically and fatigue.

Next question.

Is there a direct link between depression or low mood and fatigue?

I suspect many of you already know the answer.

Yes, there is a link.

We know that people who are depressed often experience fatigue. We also believe that fatigue itself, because it is so overwhelming and limiting, can lead to depression or low mood.

Interestingly, we believe anxiety may be even more important.

In one of our studies, we found that the people with the worst fatigue were often highly anxious.

Anxiety may therefore play a bigger role than we previously realised.

So yes, depression is linked to fatigue, but anxiety may be even more strongly associated.

Next question.

Is fatigue likely to resolve within the first year?

Many people already know the answer to this.

Unfortunately, it is not true.

Again, I'm drawing on older data because we haven't paid as much attention to fatigue as we should have.

One study showed that people could still experience fatigue three years after stroke.

Studies from Scandinavian countries have reported fatigue five, six and even seven years after the original event.

So yes, fatigue can last a very long time.

If people tell you it will resolve within a year, that isn't necessarily true.

The next question is a bit of a trick question.

Is all fatigue the same?

The honest answer is that we don't really know.

When you look at the literature and talk to people, there are striking similarities across neurological conditions such as multiple sclerosis, Parkinson's disease and brain injury.

There are also similarities with conditions such as rheumatoid arthritis and cancer.

There is some overlap with chronic fatigue syndrome and Long COVID, but there are also important differences in how those conditions present and how they may be managed.

So, those are some of the facts.

But what do they actually mean in practice?

We've carried out several studies in Nottingham. I'm not going to go through all the methodology. Instead, I'll share some of the results.

Honestly, both as a researcher and as an occupational therapist, I find the findings quite shocking.

We have heard about how fatigue affects people's day-to-day lives, how family events become less enjoyable, how it changes people's sense of identity and how dramatically it forces people to alter their lifestyles.

One thing we've noticed repeatedly is that people particularly struggle with shopping.

I think that's because shopping combines travelling, parking, noise, bright lights, crowds and distractions.

On top of that, shops are constantly rearranging where things are, encouraging people to walk further.

People have told us that they have literally put down their shopping basket and left the shop because they simply couldn't continue.

Activities that involve a lot of stimulation seem to be particularly difficult.

We also found that many people had never really discussed fatigue with a healthcare professional.

Some people described fatigue as a "thing" that nobody had ever talked to them about.

Some people thought they were merely unmotivated or lazy.

Others genuinely wondered if they were "going mad" because they didn't understand what was happening.

Of course, people often prioritise other issues during appointments, such as blood pressure, spasticity, continence problems or other physical symptoms.

As a result, fatigue often remains undiscussed.

Another important point is that when people talk about fatigue, they often focus only on physical fatigue.

What we hear repeatedly, however, are descriptions of "brain fog", slow thinking and difficulty processing information.

Research suggests that people are indeed slower when experiencing fatigue.

They may take longer to make decisions.

However, there is no evidence that they make worse decisions.

In other words, fatigue doesn't make people inherently inaccurate or unsafe. It just means they may need more time.

One comment from a participant really stayed with me, because it reflected some findings from laboratory studies.

After an interview, when the microphone was supposedly off, she explained that resting for her wasn't like resting for everyone else.

She couldn't relax by watching television, listening to music or reading.

She needed what we would call sensory deprivation.

She needed to sit quietly and do absolutely nothing.

Some people need a dark room. Others just need complete silence.

That is very different from the way most people recover from ordinary tiredness.

We also have to acknowledge the impact on families.

Carers often told us they had to actively manage the person with fatigue because, if they overdid things, they could be unwell for several days afterwards.

People described how significantly their lives had changed.

Even when physical recovery had gone well, fatigue remained a major issue.

Family members often said:

"I have to do things by myself."

"I have to manage my husband."

"I have to manage my partner, mother, father, sister, brother or friend."

Across all of our interviews, people consistently talked about how negative and limiting fatigue can be.

At the same time, they emphasised the importance of acceptance.

Fatigue isn't something you can simply fight through.

Trying to push through it generally makes things worse.

People repeatedly highlighted the importance of educating family members and helping them understand what fatigue actually means.

They also stressed the importance of seeking professional support when fatigue is becoming particularly difficult.

Most importantly, people often develop their own strategies because they have not received enough support.

One thing people often said was that some healthcare professionals didn't really understand fatigue either.

Professionals sometimes focused instead on someone's arm, leg, headache or other symptoms because fatigue wasn't viewed as important.

When people finally did speak to someone who understood fatigue, they found it enormously helpful.

People also disliked certain language.

They disliked fatigue being described as simply "being tired", because it isn't.

They also disliked people describing it as "normal", because that didn't reflect the reality of their experience.

Many people describe fatigue as being like a bank account.

If you've spent all your money, there's nothing left.

If you've spent all your energy, you can't just keep spending.

Eventually, whether you're ready or not, you'll be forced to stop.

I've mentioned some of our own research, but people often ask about previous studies.

There are literally libraries of fatigue research.

The issue is that researchers have viewed fatigue through different lenses.

Some have studied blood markers and biological measures.

Others have focused on nutrition.

Some have examined personality and psychological factors.

Others have studied exercise, meditation or brain imaging.

The problem is that much of this research hasn't produced many practical strategies that people can easily use.

We have undertaken national surveys in both the UK and Australia, asking clinicians how they manage fatigue.

The important thing to say is that much of what clinicians currently recommend is not strongly evidence-based.

These recommendations often reflect professional experience or tradition rather than strong scientific evidence.

The most common recommendation is pacing.

Quite literally, this means pacing yourself through the day and incorporating rest periods.

For example, if you have a major event planned, you might rest beforehand or afterwards.

Some people find fatigue diaries helpful.

Keeping a diary may help identify triggers or patterns.

You may notice that certain activities are especially difficult or that fatigue is worse at particular times of day.

However, not everybody has measurable triggers.

For some people, fatigue arrives suddenly and unpredictably.

Spending excessive time looking for patterns that don't exist can become frustrating and unhelpful.

Another common strategy is education.

Helping people understand that fatigue is not laziness, not a lack of motivation and not a character flaw can be very important.

The reality is that many strategies are recommended.

Some are sensible. Some are frankly rather strange.

The problem is that very few of them have a strong evidence base.

There is, however, ongoing research.

In Nottingham, we are conducting a number of studies.

Other researchers are investigating exercise programmes that may initially make people more tired but could improve sleep quality and long-term energy levels.

There are studies of medication.

There is research into cortical excitability and whether particular brain regions are involved.

There is also interest in mitochondria, the parts of our cells responsible for energy production, and whether those can be influenced.

Research into measurement and assessment of fatigue is ongoing as well.

These areas are promising, but none has yet delivered a clear breakthrough.

In the meantime, what do patients tell us?

They tell us that talking about fatigue is incredibly important.

We need more clinicians to explain that fatigue is a real and common symptom.

People find it helpful to talk to others with fatigue and to explain it to family members.

That may not solve the problem, but it does help people feel understood.

In our own studies, we're increasingly involving people with lived experience.

For too long, fatigue research has been led almost entirely by professionals.

People living with fatigue often have valuable strategies and insights that we still need to understand better.

I remember one participant saying:

"I'm just grateful that someone is listening and understands that fatigue is a really big problem."

He went on to say:

"My arm doesn't work properly, my leg doesn't work properly and I have other problems, but fatigue is the biggest thing stopping me from getting on with life."

To conclude, much of the data I've shown today comes from stroke research, but we know many of these issues apply across a range of neurological conditions and brain injuries.

Fatigue is common.

In stroke, we think around 50% of people experience it.

The figures aren't as robust in other conditions, but we know fatigue remains common there as well.

It is a significant symptom. It is not trivial.

Historically, I think we've treated it as though it were trivial, but it isn't.

Our evidence base remains weak.

There are areas that show promise, but we still don't have strong evidence for how best to manage fatigue.

As a result, different strategies may work for different people.

People want to talk about fatigue and need opportunities to share their experiences.

People need reassurance that feeling slow, confused or foggy does not mean they are incapable of making good decisions.

I haven't spent much time discussing assessment, but if someone has severe fatigue, it is important that they access services and have their fatigue formally assessed so that strategies can be explored.

The one thing we know for certain is that we need to do better.

We need more targeted research and better support.

I've finished slightly early, so I'm going to put up my email address.

Sometimes people don't like asking questions in a public forum, or they think of something later.

Please feel free to email me directly if you have a question you don't wish to post publicly.

And yes, I'm also on Twitter, or X, whichever we're calling it these days. Saying you're "X-ing" still sounds a little strange to me.

We often post updates about our research studies there as well.

You're very welcome to follow along.

Thank you.