Issue 9: Hear from the ENO Breathe Community

Participant pieces:

Caroline Smith: Training for and running a half marathon with long Covid

Caroline updates us on the half marathon which she ran last month in aid of ENO Breathe. Normally a fit runner pre-Covid, she shares how she managed to train for her recent race within the confines of her long Covid symptoms. Another inspiration showing us that there are still so many things we can do despite or in spite of our symptoms.

Gemma Lee: Training for and climbing Ben Nevis

Gemma who has only climbed one major mountain pre-Covid (Snowdon), challenged herself to another climb with her long Covid symptoms, choosing Ben Nevis this time. Not for the faint-hearted, but armed with her ENO Breathe techniques she made it all the way to the top. Truly inspirational!

Cath Nelson: La traviata dress rehearsal

Journalist, and musician in her spare time, Kath attended the recent dress rehearsal of ENO’s La traviata, and her description transports us into Verdi’s beautiful opera.

Joanna Herman: update on research results, filling in the jigsaw of long covid, what the latest studies add

Jo looks at the results from three recent major trials and wonders how they will add to our management of patients with long Covid.

Caroline Smith: Training for and running a half marathon with long covid

Prior to my illness with Covid-19, I had enjoyed 3-4 weights/bootcamp sessions a week and had successfully completed a 16 mile cross country race, which was one of my biggest running challenges to date. After one year recovering from my initial infection, I spent a further year slowly building up my strength and stamina.  Initially, this was just walking further each day on the flat, and then slowly increasing my distance on an incline. During this process I learnt quickly to listen to my body.  If I was tired from muscle fatigue, I rested.  If it was breathing problems, I slowed down or stopped until my breathing had settled, after which I would continue. I also stopped measuring myself against others: this was my journey, and the only battle I had to conquer was to work within my own limitations by recognising when I could do more and when I needed to rest.

After another year I did the ‘couch to 5k’, and then I trained for a 10k. My first 10k race was awful, I was so breathless throughout the run, despite my training.  Not to be put off, I spent another year training, this time with the ultimate goal to listen to what my body was telling me.  I slowed right down in my pace and stopped committing to running with friends on race day as this always resulted in me going too fast, which was something my lungs would just not cope with. I had learnt that I needed to run really slowly for the first 5k, after which my breathing became easier, and I could then pick up my pace and ‘enjoy’ the rest of the run.

During my recent half marathon I was boosted on by such tremendous support, and the knowledge that every kilometre I ran was raising more funds for ENO breathe. Was it easy? No, but I have learnt so much. With damage to my lungs from Covid resulting in raised pulmonary pressures and subsequent heart valve regurgitation, I was understandably extremely breathless on exertion. However, using the breathing exercises I have learnt and continued to practice daily, I found that by mile two my breathing began to settle.  Apparently, I sounded awful to the observer, but I trusted I could work my way through this breathlessness. Total funds raised to date £2020 + gift aid of £440.  For those who did not get a chance to support this challenge the link is below. Thank you ENO Breathe.

Donate to Caroline’s run

Gemma Lee: Training for and climbing Ben Nevis

In July this year I challenged myself to overcome my long Covid and chronic fatigue syndrome and climbed Ben Nevis. I first got Covid in August 2021, and then again in July 2022. Since my original infection I have needed to use an inhaler on a daily basis to keep my symptoms under control, and I was really worried that my lungs would let me down on the mountain. I am not usually a mountaineer, but had climbed Snowdon once in August 2018. I did no training for the Ben Nevis climb, apart from the breathing exercises I’d learnt on ENO Breathe. It was through using these techniques from our sessions that I made it to the top and didn’t need to use my inhaler once! I am so proud of myself for even managing the climb, but to say that I didn’t need medication to regulate my breathing was the cherry on the cake.

Cath Nelson: La traviata Dress Rehearsal

As the violins played their first, magical, creeping phrases of the prelude, I felt my excitement-starved senses rocketing towards high alert. One of the rare joys of long Covid seems to be experiencing everything in extremes. Moments of connection, of friendship, of sheer wonder, seem to be so much more affecting, and as those first glorious, taut notes trickled out into ENO’s beautifully gilded theatre, I felt fit to burst. And the singers hadn’t even set foot on the stage yet.

Coming to ENO and taking part in the amazing ENO Breathe programme has felt like reclaiming a part of my life from before. As a journalist on various classical music magazine in the 30-some years I have lived in London, I have been a regular at the Coliseum theatre, bathing in the warm glow of Puccini’s soaring arias in Madame Butterfly, and rejoicing in wonderful premieres such as Mark Anthony Turnage’s moving anti-war masterpiece The Silver Tassie.

So it has been such a pleasure to rediscover the thrill of being back in that auditorium – at once so familiar and yet, in my new long Covid state, where the dial on every sense is turned to 100, so strange and wonderful and new. Before I was ill, I would stop by at the opera as a treat at the end of a busy day in the office. Now my visits are planned as carefully as if I had a recalcitrant toddler in tow – where will I eat and how will I fit in an afternoon nap?!

In the event I had plenty of time for my customary 40 winks before setting out to meet a friend for some delicious kathi rolls, a 10-minute stroll from St Martin’s Lane, then arrived at the Coliseum with time to spare for bumping into new-found friends from the ENO Breathe long Covid clan.

I was here to see the dress rehearsal for Verdi’s La traviata, the ill-fated love story of Parisian courtesan Violetta and socially awkward, middle-class Alfredo. The opening scene set the tone superbly – a lavish party with an undertow of malevolence, Violetta cutting a swath through the sombre black evening dress of the chorus in her opulent red. As the bookish Alfredo revealed his love for her, the partygoers taunted the pair, their champagne flutes a-twirling.

Nicole Chevalier was incredible as the wanton Violetta, teetering brilliantly on an emotional highwire between passion and despair. She wrung every drop of pain from Verdi’s gorgeous phrases as she weighed the ecstasies of love against the misery of her imminent death from tuberculosis (welcome to 19th-century romantic opera!).

Due to cast illness, Alfredo’s part was sung by Zwakele Tshabalala – somewhat distractingly from a box to the left of the stage – and acted by staff director Simone Ibbett Brown, so the love scenes lost some of their immediacy. But it was a treat to hear Tshabalala again, after his fantastic performance in Blue at ENO earlier this year. He brought warmth and richness to the role of Alfredo, as the lovers faced torment after torment.

Tension built steadily as Alfredo’s cruel father – sung with suitable menace by Ben McAteer – persuaded Violetta to spurn her lover. It reached fever pitch when the broken-hearted Alfredo shamed Violetta at a society ball. As the sweeping red curtains that formed the pared-back set collapsed despairingly on to the stage, the partygoers slithered off into the wings in darkness, leaving Violetta to lament her fate. The final act was riven with grief and heartache, Alfredo appearing at Violetta’s door to beg her forgiveness just as she took her final breaths.

It was a feast for the senses – and I especially loved my perfect view not just of the stage but of the orchestra too, so adept in spinning out Verdi’s gorgeous phrases. And I was drawn to Violetta’s message, ‘For those who suffer, art can bring a consolation’. Nicole Chevalier really laid bare Violetta’s grief and loss. The profound nature of that connection – and the wild joy of being at this wonderful performance – is something I’ll carry with me for a long time.

Joanna Herman: Filling in the pieces of the long Covid puzzle: Are we getting anywhere?   

September saw the results of three important studies that I think will be vital clues in piecing together the puzzle that is long Covid. Last December I wrote an article with reasons to be optimistic with results of studies emerging this year that would provide some answers for long Covid. As the end of the year looms close, I reflected on whether I was over-optimistic or have any of those promised results translated into better care for those of us with the condition? Certainly, the results that are starting to emerge from the studies that recieved a slice of the £19.5 million in UK funding two years ago, and other international ones, are helping to fill in the long Covid jigsaw; but to date there are no biomarkers for disease to routinely aid diagnosis and monitor progress, definitions can be overly broad (and vary between countries), and are prone to bias. And many studies don’t fit the gold-standard of randomised controlled trials for looking at treatment options. So, it’s hard to make any generalisations and comparisons.

The first landmark study to make headlines two months ago sheds light on multi-organ damage in hospitalised patients, with 1:3 showing damage in brain, lungs and/or kidneys five months after their acute illness. However, it does not address the issue of those who, like myself, were not hospitalised – and who make up the majority of us with long Covid. It has always seemed ironic that those of us who were classified as having a ‘mild’ acute infection (by definition no risk factors for severe disease and not admitted to hospital), are still experiencing significant symptoms that have totally disrupted their working and personal lives.

Another important milestone paper found distinguishing features in the immune profiles of patients with long Covid, which could be vital in both aiding diagnosis and understanding the mechanisms by which the virus exerts its long-term effects. This could be key to knowing what drugs might be used, although as yet none of these tests are routinely available for all on the NHS, and it is likely that they won’t be for some time (if at all). A third paper, also published in September, identified the cardiovascular damage caused by the virus.

I would love to have scans done to know if there are inflammatory or microvascular changes in my body, and to have my mitochondrial function assessed (as I’m sure these power houses of my cells are not playing ball), and are micro-clots in various tiny blood vessels interfering with exchange of micronutrients, electrolytes, oxygen, and products of metabolism at a cellular level, that could account for some of my symptoms? But apart from a selected few who get scans, none of the above is currently happening in the NHS.

Whilst we still have a long way to go with answers from research, there does seem to be a general consensus on various aspects of long Covid (and I realise many may know this):

We know that it is a complicated, multifaceted disease with protean manifestations in those affected. There will be no magic bullet for treatment i.e. no one treatment will fit all. It is highly unlikely that there will be a single biomarker for either diagnosis or monitoring of disease. There appears to be no single mechanism for the condition, although studies may identify different mechanisms for the different patterns of long Covid.

But on the positive:

There will be new treatment options available as the results emerge from current trials. These are likely to be repurposed drugs i.e. drugs that were developed and licensed for other conditions, for example, the trialling of anti-histamines, which may be of benefit in a particular group of long Covid patients.

In the meantime, we need to continue to increase access to and use of non-pharmacological methods that seem to have benefit – proven in the case of ENO Breathe, and anecdotally beneficial in large numbers who have tried certain forms of yoga, or cold-water swimming.

As many of the studies have been limited to those who were hospitalised initially, further trials need to be undertaken on those who were not.

We need to be wary of the private sector offering treatments and ‘cures’ that have no evidence base, often at great financial cost. All drugs have side effects, some more than others, but would you really want to be taking things that have not had rigorous scientific testing for your condition? As so many of us are in our third year of illness, it’s easy to be tempted to try anything that offers even a glimmer of promise.

The lead clinician from the Oxford long Covid clinic was recently interviewed, and I found her approach interesting: she said that “People are definitely getting better. Whether or not people get back to where they once were is a different question and one that’s harder to answer. Do we get people back to that kind of fast pace of life or a functional pace of life? They are two different things. We aim for the latter.”

From what I’ve seen, some people undoubtedly get back to their pre-Covid normal, but for others that previous ‘normality’ is still proving somewhat elusive.

I live in hope that the ongoing trials will not just help fill in the pieces of the long Covid puzzle, but will translate into clinical care, which so many of us still need. So was I over-optimistic last year? Perhaps. We are getting there slowly, but we still need to ensure trials continue to be funded as we still have a long way to go.

Thank you Jo, and all our past participants for your contributions to this ninth edition of our newsletter!