Clodagh Finn: Could long Covid bring about an overdue revolution in patient care?

On Monday, following publication of what was billed as the first study of the condition in Ireland (why so late?), Professor Jack Lambert, infectious disease specialist, urged the HSE to “urgently reassess” its long Covid plan because many Irish patients are not getting better.

He is not alone in calling for a range of measures that include funding for clinics, a multi-disciplinary approach, treatment that follows the science and training for GPs. It’s really encouraging to see medical experts call out the HSE for being slow and unresponsive.

What has been most noteworthy in the story of long Covid, however, is that the people who live with it have succeeded, against the odds, in making their voices heard. Here and around the world, they have built a community, often online, to draw a map of a condition that can have over 200 symptoms.

They have done so despite the social media trolls, widespread scepticism and medical gaslighting. In some cases, medical professionals were even gaslit by colleagues, as clinical psychologist Dr Lucy Gahan outlines in her new book Breaking Free from Long Covid. She describes being gaslit in a British hospital in 2020 when a doctor dismissed “the frightening sensation” in her chest as anxiety.

Like so many others, she sought help in the support groups online where millions of people check in to report symptoms, treatment options (or, more importantly, the lack of them) and compare notes on what helps.

In Britain, the Office for National Statistics recently reported that 2.3m people, or 3.5% of the population, say they have long Covid.

Lack of data

Here, we have no such data. Last month, the HSE said it was discovering that between 10% to 20% of people who got Covid had symptoms for more than three months.

This week’s study, ‘Impact of long Covid on health and quality of life’ is a very welcome step in fleshing out that vague picture. It was conducted by Cork University Hospital, APC Microbiome Ireland at University College Cork (here’s the crucial bit), and Long Covid Advocacy Ireland.

If there is any positive to take from the continuing horror story of long Covid, it could be that we are finally starting to realise that patients’ lived experience must inform medical research.

Dr Gahan’s new book is informed by her own long Covid journey just as a second new book on the subject draws on the perspective of long Covid sufferer and patient advocate Gez Medinger. He is co-author of The Long Covid Handbook, a publication that combines the viewpoint of a patient with insight from prominent immunologist Professor Danny Altmann.

It outlines research and offers many tips which are helpful. What stands out about this book, though, is that it sets the patient’s view alongside that of the clinician who, necessarily, is trained to ignore personal anecdotes and wait for the results of controlled studies and trials.

What follows, then, is a revelatory exploration of the needs of patients versus the rigours of a medical establishment which is, to be fair, trying to address them.

In this handbook, the patient’s voice is loud and clear. That’s a phenomenon of long Covid, or at least that’s how Professor Altmann sees it. He says long Covid has brought about a paradigm shift.

This is patients saying we’ve identified the syndrome, named the syndrome, we’re calling out the agenda for the syndrome, and this is the research we’d like done.

"It’s unique in my life. I’ve never seen anything like it," he says.

Meanwhile, Medinger hopes the focus on trying to find a treatment for long Covid will help “to crack ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)” too. The ongoing failures to help people with those conditions has been a travesty of gaslighting, dismissal, and minimisation, he says.

He is absolutely right. While long Covid is a relatively new condition, there is nothing new in failing to listen to patients with chronic, debilitating conditions.

Take this arresting chapter opener from Dr Sarah Myhill in her 2017 book, for example: “Why is CFS/ME the worst-treated condition in Western medicine?”

“Because of the Name, the Blame and the Shame,” she adds, pithily summing up issues that continue to affect millions of people, predominantly women, five years after her book was first published.

Part of the issue, she writes, is that chronic fatigue is a “disease of a thousand names”. She goes on to list several of them. The one that jumped out at me was “Lazy man disease”, a label that will infuriate anyone who has felt the lifeforce drain out of them but has not been taken seriously.

Need to end the 'blame and shame'

It’s easy to see how blame and shame seep in, exacerbating an already difficult situation.

We might insert the words “long Covid” into that stark book opener and ask the very same questions. While the condition might be best known by a single name, it has myriad symptoms. Sufferers, of whom I am one, have described it as playing “Covid bingo”, waking each day never knowing which symptom will present itself.

Here is a short list of some of them: Fatigue, post-exertional malaise, palpitations, chest pain, stomach upset, memory problems, brain fog, breathlessness, and joint pain.

While the authors of the two recent books in the UK have found reasons to be hopeful, we still have a way to go to ensure patients’ symptoms filter through to the medical establishment (read the HSE).

It’s encouraging, nay revolutionary, to think that a paradigm shift might be on the way. Imagine the transformation if the experience of patients informed medical research, and by extension, medical care.

Long Covid and indeed CFS/ME affect significantly more women than men. It’s crystal clear that conditions suffered by women are often poorly diagnosed and treated within a traditionally man-made medical world. Menopause and endometriosis are two recently highlighted examples.

On the latter, here is one disturbing statistic from author of Unwell Women, Elinor Cleghorn: “Today, endometriosis affects an estimated 176 million people across the world. It takes an average of between eight and 12 years to be correctly diagnosed.”

Nowhere near enough research has been put into the painful condition and there is limited access to treatment, a point made recently by sufferer Senator Lynn Ruane.

Covid has taken its toll. It has claimed millions of lives and many more livelihoods, while it has left others with lasting health difficulties. Wouldn’t it be something if we could retrieve one positive from it all and put patients first?