Two million people in the UK are living with long Covid, according to the Office for National Statistics. Image / AP
Two million people in the UK are living with long Covid, according to the Office for National Statistics. Image / AP
OPINION:
It was while I was in the hyperbaric oxygen chamber in my bedroom, paying an awful lot of money to breathe in pressurised H2O in my "inflatable coffin", that I wondered if it might be time to dial back the expensive long Covid cures.
After all, I wasn't cured.After four weeks of getting in that chamber every day for two hours, hoping to increase my body's ability to carry oxygen to the cells that most needed it, I was still almost totally housebound.
By this point – March 2022 – I'd had long Covid for 15 months and been unable to walk further than the end of my street for the past three. I had given up work and hired full-time help to look after my two small children, who I couldn't even play with. Any sort of exertion, from lifting kids on to my knee to watching too much TV, could prompt symptoms that sent me to bed; a recurrent flu, a sense of being poisoned from the feet up, muscle pain, fatigue and excruciating stomach pains that meant I could rarely eat more than plain rice. At points I felt life as I knew it was over for good.
The National Health Service had been next to useless, offering no real treatment and little support – in part, I think, because they still don't know what the condition really is and are hampered in terms of what they are allowed to offer (more of which later) but also because of a fundamental misunderstanding of how to help patients cope. In December, a doctor from the long Covid clinic told me it would be best if I accepted that I might never again be the person I'd been before, that acceptance would help me. Soon after that, my illness worsened and I couldn't leave the house. I began to look elsewhere.
At first, I saw private doctors at the forefront of long Covid research, found through friends and forums. Sensible people publishing peer-reviewed papers on T-cells, who put me on strong antihistamine "protocols" designed to stop the propensity for histamine build-up in the body caused in some people by long Covid, and other medicines not available on the NHS because they were only licenced for different conditions. That helped, a bit.
But progress was slow, so I sought out functional medicine doctors who try to track the root cause of disease by considering the state of the whole body. Some were beneficial, but one ordered tests for everything from adrenal function to blood chemistry – some of which I later found out were useless.
I paid for private pacing lessons – instructions on how to chart every single activity in my day – to make sure I didn't exceed my energy levels. I bought a Garmin watch to track my heart rate, which raced anytime I climbed stairs, and a Sensate, a vibrating device designed to improve vagal tone, which affects how well the nervous system operates.
I did brain retraining courses. I took 30 supplements a day and tried low-dose Naltrexone, an off-label treatment; the higher dose of which is used to treat heroin addicts, but also it's sometimes used to improve immune system function. I even had a biodynamic touch session where an old lady placed a listening tube over my stomach amplifying the sounds of digestion while she gently tinkered with the "energy field" around my body, assuring me this would help me release any built-up tension in the body.
All in all, I calculate I spent about £15,000 (about NZ$29,100).
Rise of the long Covid cons
A few months on, I am getting better – about 80 per cent back to my old self. Do I regret spending all that cash? Not exactly. It's a horrifying amount and we had to raid our savings.
Most of it helped a little and I don't think any of it was an outright con; I only tried things I knew had helped someone else. I suspect the problem is that it's a complex, multifactorial condition – and different things help different people.
Meanwhile a burgeoning industry is building up around long Covid; stories abound of pricey wellness retreats and experts who ghost you after the first consultation. Some long haulers have spent their savings on importing products by Black Oxygen Organics, a Canadian company touting drinkable mud as a Covid treatment, which closed last year after facing a class action lawsuit.
What I feel disappointed by is the suggestion that NHS long Covid clinics are actually helping. Two million people in the UK are living with the condition, according to the Office for National Statistics, yet on forums most of the outrage is targeted at them.
Dr Paul Glynne, a consultant physician with a special interest in long Covid, says: "The reality is that there isn't much treatment for patients on the NHS because it requires treatment to be evidence-based and at this point there is no clinical trial data to make evidence-based recommendations. But we have to try to help patients regardless."
I now feel time is the missing ingredient to getting me to 100 per cent well, which luckily comes free. But if there were another treatment that looked safe and cheap that might get me there faster, you can be sure I'd consider giving it a whirl.
