Long Covid: Three years and no magic bullet

By Lucy Adams

BBC Scotland social affairs correspondent

I have had long Covid for three years. Even though I have made huge progress I still suffer most days with chronic pain in my joints, a rolling sense of vertigo, fatigue and brain fog.

To look at me you might think I’m fine but it is achingly painful that I can’t physically manage the activities I used to enjoy.

Before Covid, I cycled every day – sometimes long distances for fun. I even cycled around East Africa.

But three years after I first caught the virus in March 2020, I am sitting on an exercise bike in a hospital room in Glasgow, with a mask on my face for my respiratory and lung function testing, struggling to pedal.

The resistance of the machine increases and I am flagging badly.

The nurse points out they have had 80-year-olds who do the same drill with less fuss. I am 46.

Now, of course, what I have gone through bears no comparison to those still in hospital, or those who have lost loved ones.

Most days I feel incredibly grateful for all the support I have received from friends, family, neighbours and strangers.

I’m also thankful that I can do so much more than I could in those early stages.

But on the bad days I feel remarkably frustrated I am nowhere near 100%.

I have written previously about how I fell ill with Covid symptoms before the first lockdown had even started.

For weeks I was very unwell and even after the initial infection my symptoms lingered.

Months later I still suffered with high fevers, blinding headaches, migraines, vertigo, joint pain, breathlessness, gastrointestinal problems, chronic fatigue and fizzing in my veins.

After seven months I wrote about what it felt like to be what was then termed a “long hauler”. It took weeks to put together. I wrote the whole thing lying horizontal in my bed, typing with one finger on my phone.

More than a year after my first infection, I made a Panorama programme looking at long Covid and asked: “Will I ever get better?”

As a result, almost daily people still ask me: “Are you better? What have the doctors told you? What’s the treatment? What’s the cure? What’s the answer?”

The truth is I have found ways to manage my symptoms but I’m afraid I don’t have the answers.

Three years on, I wanted to check if I had missed any big discovery so I went back to some of the experts involved in the Panorama from July 2021.

Dr Elaine Maxwell, author of the first and second review of long Covid for the National Institute for Health Research (NIHR), tells me there is no single medical treatment or drug that can cure the condition quickly and effectively.

“There is no magic bullet,” she says.

“But we are seeing research that shows the long Covid clinics in England are helping people live with their symptoms.

“We would like to find a cure but in the interim there are lots of long-term debilitating conditions that we know a lot about how to manage.”

Dr Maxwell says experts have not learnt much more about “causal mechanisms” of long Covid since the summer of 2020.

“We still haven’t got the evidence to say it is a single thing with a single cause nor a single treatment,” she says.

Immunologist Professor Danny Altmann, at Imperial College London, has been looking at the theory that for some people long Covid is an auto-immune condition, that the body is attacking itself.

He has early indicators of blood biomarkers but no conclusions and no treatment.

“I would say bear with us,” he says.

“We are honestly trying. Our research is going really well. We have got lots of clues but we haven’t got the answers.

“The consensus is not clear at all.”

Dr Altmann reassures me: “You have not missed the big answer.”

At the point the Panorama programme went out, the UK was re-opening after successive lockdowns.

It was still high on the political agenda to find treatments for Covid and long Covid but since then the focus has dwindled.

A collective amnesia has crept in. People want to get on with their lives.

The latest ONS figures from February 2023 indicate about two million people in the UK have long Covid. But the collection of such figures and the Covid figures more generally has been paused.

Research data suggests between 2% and 20% of people who contract Covid will go on to have longer term symptoms.

Dr Maxwell says: “It is clear that people who have been vaccinated have a reduced incidence of long Covid and the number of people developing long Covid seems to be going down.

“The difficulty with that is that there is a group of you who got Covid very early on and still have symptoms and yet the attention and policy has moved away from it.

“There is a lot of speculation about what long Covid is, especially amongst patient advocacy groups, and the narrative has become polarised.”

Prof Alan Carson, of Edinburgh University, tells me he does not need to see biomarkers in the blood to know the symptoms people are experiencing are absolutely real, genuine and “appalling”.

“As a doctor if you need a biomarker or a screening test to show abnormalities after two hours of listening to a patient about their symptoms, then you are clearly in the wrong job,” he says.

Prof Carson compares those who suggest long Covid is “all in the head” to people who believe the earth is flat.

He was the first person who could explain in a way that I understood what was happening to me and how the communication systems between my brain and other organs in my body had gone awry.

I was one of the participants in his study looking at the impact of long Covid on the brain and as part of that I underwent an MRI scan.

It was terrifying to wait for the results but reassuring to know there was no apparent damage to my brain and I should make a full recovery.

Prof Carson agrees there is no magic bullet but believes strongly that there are tried and tested rehabilitative processes that will help people.

He also says there are very different subgroups of people with long Covid – including those who have permanent damage to lungs or other organs and people who, like me, have clear tests but ongoing symptoms.

“The problem from the beginning was the assumption that long Covid was one thing,” he says.

“It is like trying to study apples by looking at a whole fruit bowl.

“There is no doubt, for example, that some hospitalised patients have been left with permanent fibrotic scarring to the lungs but lumping those patients together in studies with those who have no damage is problematic.

“It means we’re left with a range of inflammatory abnormalities that we don’t quite understand.”

Prof Carson adds: “As a patient what you desperately need to know is ‘will this treatment make me better or worse?’

“You want to know whether you are going to get better.”

Since I wrote that first piece for the BBC, I have been contacted by hundreds of people with long Covid and ME (Myalgic encephalomyelitis), another condition which has what Prof Carson refers to as “constellations” of symptoms.

Some have suggested treatments. Some have suggested I give up and accept I will never get better. Most have asked for what I have tried and what has helped.

Clearly I am not an expert and not a scientist so I can only write about what has helped me personally and what has not.

Many people have told me they think long Covid refers to tiredness. In many ways that is the least of it.

On bad days the whole room and everything in it spins constantly and my bones split with pain.

But I have managed to do things that two years ago I thought would be impossible including returning to work – albeit part-time – and doing live TV.

Previously I was terrified I would go on air and be blindsided by the brain fog or that I would literally disappear out of shot because I was so dizzy. But I have managed.

For me, stress is the biggest trigger for worsening symptoms. I find it impossible to avoid but try to at least manage it every day.

Almost every day I go for a lie down in the afternoon. In the office I have a quiet room to rest in. Without that I would struggle to work. I am so fortunate that I have managed to keep my job, keep my home – so many others with long Covid have been far less fortunate.

I carry about an eye mask and headphones so even if I am out filming I can go and curl up in a corner and shut out the world around me because sensory overload is still very much a problem.

I swim three to four times a week. I started in September 2021 by swimming for two minutes. By September 2022 I was able to swim for an hour.

I have found that if I don’t go to the pool regularly the joint pain and headaches become unbearable. Sometimes I only have the energy to do five minutes in a session but it still helps.

One of the biggest improvements for me came when I was referred to Glasgow’s Centre for Integrative Care which specialises in long-term conditions.

I was helped to manage my days and my symptoms by Dr Bridie O’Dowd and their mindfulness programme.

It is not something I would have considered previously but I still try to use what I learnt every day.

As part of that she helped patients understand the need to build small things into each day which bring joy – even if it is just sitting in the garden or reading a book.

I do breathing exercises and yoga as often as I can and try to pace my activities. Singing lessons helped with my breathing and I’ve recently joined a choir.

A year ago I started on a drug recommended by Prof Carson which is used for a variety of different purposes but which for me has meant a huge reduction in the constant sense of vertigo.

In December last year I thought I was doing better than ever but then got Covid again and struggled to recover.

Frustrated, I tried hyperbaric oxygen.

It was an interesting experience. It felt like it helped a little but I did not come out bounding with energy nor free of pain and brain fog.

I’m aware some have found its power to be miraculous. I am glad for them. It was not a miracle cure for me.

I am far more aware now of how many people are managing silently with invisible symptoms including chronic pain and chronic fatigue for a range of conditions including long Covid.

I often feel overwhelmed by the knowledge and the fact I can’t fix them nor myself.

I’m writing this not because it is comfortable or fun to write about the condition, but because I am doing so much better now – three years on – and I hope that in some small way it might help other people to know that.

Ultimately I would like to know when I will get better and if I will ever get back to 100% but I am grateful to come as far as I have.

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