It's 11 weeks since I started with a fever and some
symptoms of coronavirus.
I'm Lucy Adams, a BBC correspondent.
I've got a really hoarse sore throat and a headache.
I got Covid last year.
But never got better.
I've been ill for eight...
I've been ill for eight months now.
Getting really fed up on it.
Like a million others in the UK, I have long Covid.
Banging headache, aching all over, earache, sore throat,
my chest is killing me.
I'm absolutely exhausted.
I want to know why we're feeling so bad...
Take a deep breath.
What's behind this baffling condition...
If we knew that, I feel like we'd have quite a lot of goodies
to offer people to maybe, you know, make them better.
...and with fears of far more infections as Covid
restrictions are lifted, will I ever get better?
DOORBELL RINGS
How was school?
Good!
We did mother's day stuff for you.
Did you? It's secret!
Don't tell me then!
I live in Glasgow with my husband Andy and daughters Nuala and Niamh.
He usually picks them up from school because I struggle to.
I tend to go to bed a few times each day.
When I'm up, I look fine,
but I get more and more tired,
and symptoms come in.
So like shaking.
I'm normally in bed between 1?3.
I try to get up for the kids coming back.
You making this for mother's day? What are you making?
The sky because my mummy loves the sky and birds.
Is Mummy able to come outside with you a lot?
No, cos sometimes she's in bed and sometimes she just walks.
Yeah.
I'm not the only one in the family who's ill.
Did
Office
Yes.
Why did you go to the headteacher's office at breaktime?
Because I had long Covid.
And you had to go and rest?
Nuala, who's eight, also has long Covid.
She has good and bad clays, with bouts of fatigue.
An estimated 33,000 children in the UK have long Covid.
I'm pretty exhausted.
Trying to hold down a full time and quite demanding job and then
Lucy's illness is so unpredictable.
Well, I say that, but it's predictable in the fact
that she does half hour or a one hour activity
and then she's exhausted.
Me! That's beautiful, Neave!
Look at that.
You kind of become a bit of a spectator.
I feel much older than I am which is difficult,
and it's really hard on Andy as well,
cos he has to juggle work and juggle being an entertainer and a cook.
And he worries cos I do too much and my symptoms then flare up.
You just have to have admiration for her ? the way she has handled it
psychologically ? going from someone who is out cycling to work everyday,
up mountains at the weekends, out running with the kids, to someone
who has got the activity level of someone maybe 30 years older.
At least one in eight people who get Covid go on to get long Covid.
Most say it's had a big impact on their lives.
So my partner has gone out with the little one and the very
very little one woke up very quickly, so I gave him some
milk, very tired.
As you can see, not very happy.
However, I can't stand up or settle him so I basically have to sit
here with him crying till Mummy comes back home.
Today, I'm struggling, I'm tired, which then makes me really worried
about returning to work.
I just want to get back and be a nurse.
Around a million people in the UK have long Covid ? studies
suggest most are women.
And at least a third ? like Suzie and me ? have had it
for more than a year.
That's just going up my stairs.
Tired.
Hey, Suzie, how are you doing?
Hi. How are you?
I'm all right.
Sorry I can't be there in person.
I'm too unwell to travel to Suzie's, so we meet on Zoom.
Suzie is one of around 120,000 healthcare workers with long Covid.
She's desperate to get back to the wards ? but for now can only
do desk work from home.
I sometimes can't find the words, especially when I'm tired
and quite fatigued, it's worse, but...
And I'll be like, I know the word, I know the word, I know...
I can see it in my brain, but I just almost like can't pick it
out and get it to come out of my gob.
It's
Like, there is one word and I'm going to try to say it...
Dom, domes...
Ah, can't say it!
One in five long Covid patients struggle with memory,
concentration or brain fog.
I just kept on thinking, I'll be over this soon,
I'll be over this and I'll start getting better.
And I actually at one stage thought I was going completely and utterly
barmy - am I imagining this, am I being a hypochondriac?
So then I was driving even harder, driving myself even harder
and harder to get better and push through those moments where you're
completely exhausted.
Other people just didn't get it, you know.
One person turned round and said to me, "Erm, well, you go out
to the shops, don't you?"
They didn't see the walking, you know, and then the after effect.
And it was just really, really quite upsetting at one...
It's like, "Are you all right?"
Oh, bless.
Sorry.
You are just describing it so well.
Her story is so like mine it's hard to listen to.
I did stuff like going...
I was so determined to sort of push on through so I would do
what I would normally do, so go for a bike ride,
I'm really struggling to breathe but I'm on my bike,
"l'm fine, I must be fine now."
And then came back...
My temperature was 103 and I had to go straight to bed,
and you think, "Well, anyone who saw me on the bike ride
would be like, Well, she's totally fine, totally...
She looks fine."
Today I've got an appointment at my local medical
centre for a blood test.
It feels really weird to be out of the house,
and to be filming again cos I've not been working for such a long time.
A little bit nerve-wracking.
I've already had one set of blood tests, a chest X-ray and a heart
check ? all of these came back normal.
My heart is racing now after coming up the stairs.
I should have taken the lift but I'm really stubborn.
Lucy?
It's thought several different things could be
to blame for long Covid.
Organ damage from the original virus.
The virus reactivating.
Problems with the immune system.
Or it could be a combination of all these things.
I'm still out of breath from walking up the stairs.
Just relax, OK.
Sharp scratch.
It's a new disease - so there aren't any
diagnostic tests yet.
My blood test will simply rule out if there's anything
else wrong with me.
Got my bloods taken this morning - should have been a really easy,
simple thing to do.
It's five minutes away, in and out.
I just feel completely and utterly wiped out.
I get the results a week later ? again, they are all normal.
Across the UK, governments have invested around £50 million
in research into the disease.
Professor Danny Altmann has been studying viruses for four decades.
His team is analysing the blood of people with long Covid
to try to discover the cause.
They suspect the answer is in our immune system.
I'm pleased the numbers are perking up a bit.
What are you looking for, what are you hoping to find?
We're trying to explain, you know, what is the common denominator
between the symptoms and where have they come from, because if we knew
that I feel like we'd have lots of goodies to offer people
to maybe, you know, make them better.
How's it going?
When you get a virus your immune system creates antibodies
to fight the infection.
But sometimes this can go wrong...
Surprisingly complex.
So, what the team are looking for here is what's
called "auto antibodies" which attack healthy cells.
We know that in some people, when they get infected
with coronavirus, the body can also generate
antibodies against self proteins or human proteins,
and we call those antibodies auto antibodies and they can be
much more problematic.
And in some cases, that can mean that the immune system actually
turns on our own tissues or our own proteins and can
actually cause disease.
At the moment, we don't know whether auto antibodies
are a feature of long Covid.
If the team find signs of these damaging auto antibodies,
then diagnostic tests and treatments could follow.
But while we wait for science to catch up with this new disease,
how long might our symptoms last?
You know, is this a six month problem or a one year problem
or a five year problem or a forever problem?
None of us know.
If you asked me to kind of, you know, place my bets from things
that I know about other related, kind of post viral
immunological effects, I'd be disappointed if most people
with long Covid weren't better or feeling quite a lot better
within two or three years max, I hope.
That's a long time to feel as ill as many of us do.
It could mean many thousands of people are off work for years ?
A significant impact on the economy and the NHS.
My guesstimate is that the healthcare needs for those
people run in to the billions, and it's not just the money, it's
which clinic will they be seen in?
Who will the doctors be?
Who will the nurses be?
As the interview ends, Nuala has some questions
of her own about the illness she too has had to cope with.
Why did my body think Covid was still there?
That's a good question.
One of doctors said to me it was almost like a ghost of the virus
in your blood system, a ghost of the virus
was still in your blood system.
I don't know and they still don't know if it was the live virus
attacking your body or your body itself sort of got confused
and your immune system started attacking itself and again.
I don't know and they are still trying to work that out
and if they can work that out, then hopefully they can find
a way of curing people.
You've got makeup?
Yes, I have got makeup on.
Why, so you didn't look so tired?
Yes, and so that I looked less tired and so I looked OK on camera.
Long Covid means Nuala has struggled with full time school.
In April she was admitted to hospital for tests.
They gave her a device to help with her breathing.
I've been quite out of breath running with my friends,
like really fast and out of breath.
Because my lungs, they aren't proper or something.
Is that what the doctor said, your lungs aren't working properly,
so this is to get them stronger?
And do you feel like it's helping?
You lose that spontaneity in your life because you can't just
think today is a nice day, I'll go for a walk.
What energy you have, you have to plan it.
While some people may improve with time and rest,
others may have organ damage that needs medical treatment.
Athmaja Thottungal, a consultant anaesthetist,
got Covid in February last year.
I started having severe joint pain, heart racing, chest pain,
difficulty breathing.
I had a couple of days in the night I woke up from sleep
with intense chest pain.
That really made me quite alert about this because I thought
I need to get some...
...some more help.
Later, when Athmaja had her heart monitored for 72
hours it was discoverd she needed medication.
She's waiting for further tests.
She's unable to do much things around that that makes it...
...but that's the reality.
Yeah.
Like you know, but it is the having a shower and he's standing
there just to make sure that I don't fall down and by the time I come out
of the shower I'm breathless.
Then he has to dry me up, so.
Like a baby.
Yeah, look after me like a baby.
One study suggests that four months after first getting Covid,
two thirds of patients have some organ damage.
For most this had cleared up by the follow up
scan six months later.
But heart problems were more likely to persist.
So what help is available to patients?
Leicester was one of the worst hit cities during the first wave and one
of the first to open a long Covid clinic.
This is an appointment to see how you are feeling now
and if there are any ongoing problems and if you need any
further investigations.
I felt breathless and I had a pain in my rib cage here.
The clinic has been open for 13 months and has seen
thousands of patients.
What job do you do?
Shift manager.
I'm back on a phased return.
So the ongoing symptoms you're left with fatigue, brain fog,
numbness on your right thigh, hair loss, what about
the breathlessness?
Because you said that was really bad for the first few weeks.
This is Enya, one of our senior physiotherapists.
These persistent symptoms seems to be something
that the virus has caused, either in inflammation or auto
immunity or in other mechanisms and that doesn't seem to matter
whether somebody was hospitalised or not at the beginning,
and that's why it's really important that we have equitable
care for both groups.
At first, this clinic only treated patients who'd been
hospitalised with Covid, some of whom had pre-existing
health conditions.
But now they're seeing patients who weren't hospitalised too.
We're going to discuss Samya this morning.
We'lljust take you through one at a time.
We need expertise from different
disciplines so be that nursing, physiotherapy, occupational therapy,
psychology but also heart specialist, brain specialist,
specialists in diabetes so that we really put a package
of care to help the person with all their different problems.
But access to this kind of care can vary greatly,
depending on where you live.
Wales, where I live now, doesn't have any long Covid clinics
and they aren't planning to set any up either.
After the referral, I was told the clinic was not running.
I was passed from pillar to post and it was really, really confusing,
a real battle and hard to fight when you're sick.
While I've been stuck at home, I've been looking into where long Covid
clinics are available.
There are 89 in England.
Some only accept patients who've been hospitalised.
And there can be long waiting times.
NHS England says it's invested more than £134 million
in long Covid services.
Neither Scotland nor Wales have specialised clinics.
Both say they are strengthening existing services.
Scotland is funding research.
Northern Ireland's first clinics will open in October.
I'm going to Edinburgh tomorrow to get a brain scan.
I'm part of a study looking at impact on brain of long Covid.
I guess I'm feeling a bit nervous, hope they don't find anything.
Researchers at Edinburgh University are scanning the brains of 100
people with long Covid.
I suffer migraines, vertigo and brainfog.
Could these be signs of brain damage?
Can I get you to just walk backwards and forwards
across the consulting room a couple of times?
I am quite conscious with my walk, I look a bit drunk.
I think that's just my dizziness.
Touch my finger.
Professor Alan Carson is a leading neuropsychiatrist.
Before the scan, he puts me through a battery of tests.
I'm just moving my finger to make it harder for you.
Oh, yeah, sorry.
His team are not just looking for signs of brain damage.
They also want to see if our brains and bodies may be
They also want to see if our brains and bodies may be mis-communicating.
Dizziness?
Yes.
Heart pounding?
Yes.
Nerves or feeling anxious?
Yes.
Ultimately, pain is only perceived in the brain,
temperature control for the body comes from the brain,
breathing regulation comes from the brain,
sense of balance comes from the brain and all of these
things can be distorted by brain functions.
I'm so exhausted after four hours of tests, I fall
asleep in the exam room.
Next, is the brain scan.
There's her teeth and her lips coming through, nose, eyes,
base of her neck, spine.
It's quite weird looking at your own brain.
Yeah, but if you have to look at your brain,
you want it to look like that.
Basically, that's nice and healthy looking.
There's no sign of any damage to any of the white matter or anything.
Although you've had a rough time of it, most of the problems
should be reversible.
That's a relief, but what does he think is causing my symptoms then?
Your constellation of symptoms are quite typical of what people
report with long Covid.
You've clearly got a tendency towards a breathing disfunction.
It's understandable from the time you were acutely unwell that you've
developed this sort of rapid pattern breathing in the aftermath.
That leaves you feeling breathless after any activity.
This is a revelation for me.
My poor breathing leaves too much carbon dioxide in my system,
which could partly explain some of the symptoms,
including headaches.
He refers me for respiratory tests.
Do you think that people with long Covid overall,
difficult question, will get better?
Yes.
I think the evidence is already emerging that the majority
of people get better.
There will be some people with post-Covid complications that
will involve structural damage, whether to the brain,
my area of interest, or whether to your lungs or heart
and there the outcome will be more variable.
But I think for the majority of people, it's about a slow
recouperation period rather than permanent sickness,
I've finally got an explanation for some of my symptoms,
but I still need more tests and may have a long wait before I get them.
As the UK opens up, there are concerns many more people
could be at risk of long Covid.
I was sort of aiming towards somewhere with a bench to be honest.
Covid cases are rising fast.
While the vaccine reduces serious illness or death,
it doesn't stop all infections and children and many young people
haven't even been vaccinated.
One of the things we know for absolute certain is that long Covid
can ensue from any form of infection, asymptomatic, mild,
severe, so if we're heading into a phase of 100,000
cases per day in the coming months and we're saying that ten to 20%
of all infections can result in long Covid,
I can see no certainty that we're not brewing those long Covid
cases despite having a vaccinated population.
But Professor Altman says there could be some good news
from the early findings of his research.
His team is analysing the blood of long Covid patients
for signs of auto antibodies which attack healthy cells.
The pilot data we have says that you really can pick up different
patterns of auto-immunity in people who have long Covid, so, you know,
it's the start of the road but we're quite chuffed about it.
It's only a small study and more research is needed.
But having identified these auto antibodies,
they hope it'll be easier to diagnose this form of long Covid
in the future.
I'm famously optimistic, so I'd hope that within six months
we'd have a simple blood test that you could get from your GP.
And that, I think, could have quite a big impact for people who don't
feel they've managed to convince their GP
or accessed specialist care.
Because instead of being, you know, my word against yours,
it has a diagnostic test.
It's been 16 months since Nuala and I got Covid.
She is nearly back to normal.
I've got more energy and have fewer symptoms.
But I still wake every morning with what feels
like a horrible hangover.
Not sure if I'll ever get back to being who I was before.
And it's that uncertainty that's hardest to bear.