Long COVID raises hope for 'forgotten' people with chronic illnesses

Scotland’s recovery from the pandemic naturally dominated the election campaign. From restarting NHS services, to rebuilding the economy, to ensuring kids don’t miss out after a year of disrupted education, politicians of all parties insisted responding to coronavirus was their number one priority.

But as we collectively eye the light at the end of the tunnel, there is also concern that talk of building back better was just a nice soundbite in the early days of the pandemic. Nowhere is that concern more acute than among the long-term casualties of COVID-19.

“My entire life is on hold at the moment, really. My career has taken a big hit. It’s been very challenging with my relationship with my girlfriend. There’s no getting away from the fact that it’s kind of impacted almost every aspect of my life and I’m still just basically sat around waiting for my life to start again,” says Callum O’Dwyer, a 29-year-old Aberdeen man who for the last year has been battling post-viral syndrome triggered by coronavirus.

O’Dwyer was among the first in Scotland to be infected with the virus. He became ill towards the end of March 2020, displaying all the typical symptoms of COVID though never severe enough to be admitted to hospital. After being unwell for more than two weeks, he took the decision to temporarily move back in with his parents because he was unable to care for himself.

But a year later, O’Dwyer was still having problems with breathlessness, fatigue, brain fog and many other symptoms. He is one of thousands of people across the UK to develop what is colloquially known as ‘long COVID’.

New clinical guidelines published at the end of last year formally recognised the condition. The guidelines separated long COVID into two distinct diagnoses: those who have not fully recovered from COVID after four to 12 weeks have ‘ongoing symptomatic COVID-19’ and those whose symptoms continue beyond 12 weeks have ‘post-COVID syndrome’.

O’Dwyer has the latter. He reels off the various symptoms he’s had over the last 14 months: “I’ve had heart issues, palpitations, tachycardia, ectopic beats, I’m currently on the waiting list for a heart scan. I’ve had excruciating stomach pain. I’ve had certain neurological symptoms, so I’ve had a bit of a tremor before but at times it can get quite severe. I’ve had terrible brain fog.”

But the biggest challenge of all has been the fluctuating nature of his symptoms. “It’s been a very non-linear recovery and even something fairly minor like a cold has set me back what feels like months. It’s been a very difficult journey, a very challenging one and although some of my symptoms have improved, sometimes that doesn’t last very long and I’m always aware of the fact things can get a bit worse.”

He adds: “There have been times, especially lately, whenever it feels like there’s been a setback in your recovery like in the last few weeks, when things get to a really dark place and [there’s a] sense of, will I escape this? Will I ever be able to get through this? And particularly compounded by the fact that medically speaking, doctors don’t know how to treat this.

“There is no drug they can prescribe and no particular treatment they can offer. At the moment they are feeling their way through this as much as we are and waiting for research to come through. That sense of just being left to wait and to call if ever there’s anything worrying.”

There have been times… when things get to a really dark place and just any sense of, will I escape this? Will I ever be able to get through this?

The unpredictability, the mental health impact, the inability of doctors to help – all of this is a familiar story for others who suffer from chronic illness. Eli Bracken has Ehlers-Danlos Syndrome (EDS), a genetic disease which affects connective tissue and can cause severe joint pain and frequent dislocation. Despite it being a lifelong disability, Bracken was not diagnosed until he was 25 – and that was after three misdiagnoses. He is also now struggling to get a diagnosis for a second condition, urticarial vasculitis (UV), through the NHS.

He explains: “UV began in summer 2019, but the length of my flares  (flare-ups) compared with the waiting times for NHS dermatology mean that I still haven’t been diagnosed, as I need a skin biopsy when it is active.

“This means I’m stuck in a cycle of flare, get referral, be ill without treatment for around three months, spontaneously get better, see the dermatologist, be told they can’t do anything. I went to a private dermatologist who diagnosed me because I was desperate for some kind of treatment, but the NHS won’t accept his diagnosis without a biopsy which is understandable but frustrating.”

And Bracken feels doctors don’t always listen to what he is saying. He has frequently been called a hypochondriac and once told he was “very emotional”. “I also find quite a lot that doctors do not like it when you know more about something than they do, but without my own research I would not have been diagnosed – and when every aspect of your life is shaped by a certain condition it is practically impossible to not learn a great deal about it. It is a constant balancing act of pushing for treatment and appeasing doctors’ egos.”

It can be exhausting, which is particularly difficult when chronic fatigue is also a symptom of EDS. Time spent battling the healthcare system or the benefits system must be balanced with simply trying to live life. Bracken says: “Every day I have to figure out how much energy I have, and then work out how to prioritise the things that need doing and doing that takes a lot of energy.”

He is also critical of the welfare system. While benefits are available to those with any long-term medical condition, including those which fluctuate, the nature of assessments for things like Personal Independence Payments (PIP) make it difficult to claim. Bracken describes himself as “incredibly lucky” to receive the benefits he does, adding: “PIP especially is almost impossible to get. Assessors have only seven days training, are very unlikely to know anything about your condition, don’t take into account your medical notes, and have very high rejection targets. I and many people I know have received our reports back accusing us of lying.”

It’s an issue Action for ME have been concerned about for years. Chief executive Sonya Chowdhury says: “Being able to do something repeatedly, reliably and safely is really important, but what we know is that’s not being applied in terms of assessments. You only have to look at the number of tribunals and decisions that are overturned to know how negatively impacted people with disabling, fluctuation conditions like ME, like Ehlers-Danlos, like fibromyalgia, like lots of others are treated.

“I think, you know, it really comes back to understanding. If you’re faced with assessing a condition where you do not understand that fluctuating nature and you do not understand how symptoms can change and fluctuate over time, then you’re making an ill-informed assessment.”

Every day I have to figure out how much energy I have, and then work out how to prioritise the things that need doing and doing that takes a lot of energy

Chowdhury also raises the knock-on impact of a lack of understanding in wider society, not just in formal settings like benefits assessments or at the GP. Her own son, Danny, was diagnosed with ME (sometimes known as chronic fatigue syndrome) seven years ago following a chest infection – incidentally one year after she had started at the charity.

“I don’t know how to articulate how awful it was,” she says. “He couldn’t get out of bed, he was in a darkened room, he couldn’t get downstairs. My husband might carry him downstairs on some days. He couldn’t be on his feet for more than 15 minutes a day and that included going to the bathroom.”

She adds: “We had fluctuating experiences in terms of understanding. We lost friends who would say maybe you’re mollycoddling him, maybe he’s having problems at school. We have great support educationally and then got threatened with education welfare at a later stage. Even down to family members finding it very difficult to understand the illness.

“It’s heartbreaking watching your child going from being very active to not physically being able to get out of bed and to do things. And the isolation – he once said to me ‘I feel as though I’ve got no place in this world, not sure my life’s worth living’. Age 11, to hear that as a parent from a child that previously was doing well academically, physically, socially… It’s been very, very tough.”

However, there is a ray of hope for all chronic and disabling conditions after the spotlight shone on long COVID. Chowdhury says lockdown has almost been a “blessing” for Danny, as being able to access his education remotely means less of his energy is spent on getting to and being in school. More broadly, she says lockdown has also given people “a glimpse into what it might be like for somebody with ME” in terms of not being able to see people or being housebound.

Action for ME is one of a number of organisations on the new Long COVID Alliance, hoping to channel the focus of the pandemic into previously ignored conditions. In particular, the charity is keen to ensure that research into long COVID furthers understanding of ME and other post-viral conditions.

Dr David Strain, the BMA’s representative on the separate NHS long COVID taskforce, has written about some positive action he is seeing already on this. He said: “I was already working on chronic fatigue syndrome and pre-COVID it was very, very difficult to get anyone to take an interest […] I put grant applications in to do work into the underlying causes of CFS (chronic fatigue syndrome), pre-COVID, and they were commonly side-lined as low priority; now exactly the same grant applications are being funded.

“Most of the patients in our CFS network are looking at the research that’s going on in long COVID and asking if this is a hope for them, because of the amount of political drive that’s going into it.”

For O’Dwyer, things are already looking up. Following his COVID-19 vaccination at the end of March, he’s noticed an improvement in his symptoms. In a tearful video posted on Twitter, he said: “I’m not Grandpa Joe from Willy Wonka, fully cured, jumping out bed whooping and hollering, but I definitely have a big bit of my life back. I can’t tell you how good that feels.”

But with anecdotal evidence the vaccine may be a cure for long COVID, the opportunity to change the lives of thousands of others with chronic conditions may be slipping away.

Chowdhury says: “There’s a concern that people with ME will once again get forgotten and that the focus will be on long COVID and not on those people who have been ill for 20, 30, even longer, years who’ve had a lack of support, lack of treatments, lack of understanding, lack of funding for research and no real hope of that changing.”