‘Please listen to me. Please help me.’
This is the desperate plea of Hannah*, a 30-something in Hertfordshire, who’s had Long Covid for two years – and counting.
‘Help’ is all Long Covid patients want, but it’s the one thing no one quite knows how best to give.
Hannah – who has chosen to keep her identity anonymous in case her illness has an impact on her employability – has repeated this statement many times to health professionals who don’t understand what she’s going through, as well as practitioners in the wellness and non-medicinal space who are selling – in her eyes – a pipedream of recovery.
And the cost is racking up.
Speaking to Metro.co.uk, Hannah says: ‘I’m spending £160 a month on a cocktail of recommended vitamins, £50 bi-weekly on therapy to help with the heightened anxiety [it was weekly but she can’t afford that anymore], £180 on acupuncture sessions that didn’t help at all, £550 on a tool that sends a pulse through a nerve in my ear that I use nightly for 45 minutes, £1,000 on an infrared skin device as my acne has since flared up, and I tried a low histamine diet for a while which saw my food expenses go up. That also didn’t help – it just sucked more joy out of my life.’
In all, she has spent thousands over the last two years to try to get well again. So far, nothing has worked.
‘It feels difficult to use the word “recovery” and to decide how helpful all these things are, because I’m still ill,’ she adds. ‘Because you don’t know what’s helping, you just try more things.’
This road for Hannah is long, but Long Covid has a relatively short history.
Having only been conceptualised since early 2020, with just two years of scant data behind it, suitable treatments are foggy. However, suffers are naturally keen to try all that science and pseudo-science has to offer in the hope of recovering.
Since developing Long Covid, Hannah’s life has ‘completely changed’, being able to only work from home while having to cull her social life, rest often, and operate at a far lower capacity than life pre-Covid. She’s clearly distraught.
For people like Hannah, there are all kinds of suggestions: diet plans, costly recovery programmes, dedicated classes, and more – all in the name of lessening the duration of a Long Covid case, or at least making it more bearable.
The debilitating illness has left people in dire need of help – but Hannah says it is hard to find the level of understanding and support that is required, especially when it comes to seeking out treatments.
Her journey began in March 2020 as she repeatedly fell sick following a case of coronavirus. At first, doctors couldn’t help.
Now, she’s finally been referred to an NHS Long Covid clinic. Though she’s had just one appointment, the initial advice has been to rest, try yoga, and other basic remedies she has already thoroughly explored.
The self-curated treatment plan that has kept Hannah going so far was born out of desperation. Hannah, and so many others who have found little support for Long Covid in traditional medical spaces, have had to look beyond the NHS.
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Retreats for the wealthy
One of the most controversial wellness treatment options out there are Long Covid retreats, some of which involve travel abroad, often totaling to thousands of pounds.
The itineraries include things like massages, diet plans, physiotherapy, foot baths and colon cleansing.
Critics may look at these costly luxury programmes and wonder if they are any more than a glorified spa visit – how are those in charge getting away with these high price packages?
Emma Tucker, a post Covid rehabilitation coordinator, and Dr Anton Pick, both working at a Long Covid NHS clinic in Oxfordshire, say while ‘holistic wellbeing treatments can be beneficial for individuals with Long Covid, we would caution people against spending a lot of money on these when there are NHS services available.’
After all, an article in The Lancet, a medical journal, clearly states: ‘The disease mechanisms causing Long Covid are unknown, and there are no evidence-based treatment options.’
The article from January 2022 also notes the ‘absence of research’ and how that’s left people on an individualised ‘search for therapies’ and ‘alternative’ treatments – which might be why, those are able to, are willing to cough up.
So, given the lack of concrete data on effective therapies, you have to question the motivations of the companies charging hundreds – or thousands – for packages purporting to help Long Covid patients.
There are many retreats in varying locations, all at differing costs and stay lengths. One in Somerset, Arrigo Long Covid Healing Programme, reportedly costs £2,500 a day, with a minimum seven-day stay. Another, called Post Covid by Vivamayr, comes in at over £2,700 for a week. Neither commented when we reached out to them.
Dr Peter Gartner, medical director at Park Igls, which offers a Fit after Covid package, is just one of the doctors working on this side of Long Covid recovery. Prices for this retreat in Austria start from just over £3,000 a week.
When asked why a ‘beeswax liver compress’ features, he explains it can ‘increase the excretion of toxins that circulate in the blood, thereby supporting the detoxification process’.
This might perhaps be what Emma and Dr Anton mean when they say ‘novel Long Covid treatments may emerge’, and while some may have their efficacy, they add that: ‘As with any long-term medical condition, holistic care and expert guided self-management remain central to treatment.’
At best week-long retreats are thoughtfully considered, at worst it’s guess work based on what little concrete information this is on Long Covid – especially when NHS specialists say maintaining a restful routine is vital, rather than a rapid-fire programme that can’t be sustained.
Ultimately, Dr Gartner believes ‘it’s doing well’ in supporting those who attend, though admits long term success is impossible to deduce as of yet.
Attendees have largely seen the week through, aside from one ‘impatient’ Long Covid sufferer who walked out after two days, Dr Gartner says ‘because they weren’t feeling better yet’.
To those who doubt the methods and question the legitimacy of this retreat, Dr Gartner says: ‘We are five doctors – you won’t find this in any spa – and 40 medically trained therapists and specialists. So I would say, just try it.’
Indeed, many probably would if the cost wasn’t so high.
Hannah hasn’t even thought to consider this as an option.
She says: ‘I just don’t have that money, so retreats are not even worth looking into. And I have completely drained my savings. I don’t have the room for trial and error anymore.
‘If something is going to put me back thousands of pounds, I need to know it’s definitely going to work.’
Can holistic remedies make a difference?
It isn’t all doom and gloom though – more accessible holistic remedies have been reported to be helping some sufferers.
One of those is Iyengar’s Yoga Classes for Long Covid, which have been designed to include poses known to ease breathing and that are purely restful.
Gerda Bayliss, one of the classes’ teachers who has Long Covid herself, having caught coronavirus four separate occasions now, says the classes are different to regular yoga.
‘The postures gently open out the body and reduce tension without effort or strain,’ she tells us.
‘Within each class individual programs are created for each student according to their symptoms.’
The movements are restful, as there is a risk of stalling recovery if someone with Long Covid exercises too hard too soon, as those with the condition need to be careful with the intensity at which they exert energy.
After a previous 10-week yoga programme for Long Covid, the company is now evaluating the data collected from those who attended, conducting in-depth interviews with them.
Gerda says: ‘We are doing this with an academic partner, York St John University, and intend that it will form the basis of a rigorous research trial in the future.
‘There is some evidence that certain meditation, yoga asana, and pranayama practices may possibly have the power to help,’ citing research in The Journal of Alternative and Complementary Medicine.
She explains that certain positioning, that can be found through thoughtful yoga practice, can help aid difficulty in breathing.
‘In the ICUs, Covid patients are being proned – which means to be turned onto their front. This change of position helps people to breath by engaging the back of the lungs,’ she says.
‘When I really was struggling with my breath and couldn’t get out of bed, just understanding how to position a pillow underneath my diaphragm, or underneath my chest was a huge help and support.’
Rosalyn Clare, 53, has been attending a similar class targetted at those with Long Covid, for £20 a week.
In September 2021, while double vaccinated, she caught Covid and though her case was mild, she’s still unable to work full-time and until January wasn’t working at all.
‘I don’t know why it’s helped, but it’s expanded my chest a bit and I’m better able to breathe,’ she says of the yoga, which sees her hold restful poses for five minutes.
She credits it with ‘calming the storm’ and helping with insomnia.
But it isn’t a cure-all – she’s also tried intermittent fasting with some success, and found a Facebook community specifically for Long Covid sufferers.
‘It’s contributing to my longer-term recovery,’ Rosalyn explains. There are no overnight wonders here.
In a similar vein, the English National Opera has designed a programme in which Long Covid sufferers are taught operatic breathing techniques to support their lungs and reduce anxiety. It’s free if you’re referred by the NHS, but you need to meet a string of requirements.
After their initial pilot run, 90% of participants found their breathlessness had improved, 91% said the same of their anxiety, and 100% planned to continue with the exercises.
Jenny Mollica, Director of ENO Baylis, tells Metro.co.uk that in recovery treatments like this, ‘de-medicalising’ the process can be helpful for people who are overwhelmed by the illness.
While this may be true, in options not backed by the NHS, you have to question where the science is – and whether it is thorough enough.
The price of healing
Long Covid treatments have been costly for Hannah – both literally and emotionally.
Ironically, the treatment style that has helped her the most is the only one that’s free.
Since adopting ‘pacing and resting’, a lifestyle pattern recommended for those with myalgic encephalomyelitis (ME), she’s noticed some slight difference.
It involves planning out your days to incorporate rest so that you’re pacing your energy. The self-management tool means every hour is accounted for.
‘Any sense of spontaneity is gone,’ Hannah says.
But her search for good health through new means continues – which is in itself exhausting, especially as the hearsay around any treatments that pop up is overwhelming.
Hannah says: ‘Everyone wants to give you advice and say you must try certain things they’ve heard about – if I did all the things I’d been recommended I’d be in £50,000s worth of debt.
‘People need to be more understanding of that – it’s almost like victim blaming.
‘Acupuncture was something I felt guilted into trying because so many people pushed it.’
Acupuncture is a common feature in Long Covid retreats. Hannah’s experience was far from positive.
‘That was the treatment that made me realise I needed to release myself from the guilt that I wasn’t doing “enough” to heal,’ she says.
‘It was the first time I felt someone was cashing in on a vulnerability.
‘After I stopped going due to a lack of funds and not finding it helpful, the practitioner texted me saying my “energy” was telling her it was working and my Long Covid had reduced by whatever per cent – that she could feel it from my “aura”.’
There are other things on Hannah’s list to potentially try, but she’s no longer in a rush to part with her hard earned cash when success isn’t guaranteed.
‘This has completely changed my life,’ she accepts.
To our current knowledge, it’s pot-luck who gets Long Covid – but there’s an even bigger pot, this one made of gold, that sufferers are desperately digging into.
Time may eventually tell us which treatments and programmes will actually have a beneficial and healing effect, but only once Long Covid is demystified.
*Name has been changed.
Long Covid - what you need to know
Most infections with Covid resolve within the first four weeks. Long Covid is a term commonly used to describe symptoms that continue or develop after you've had the initial virus.
An estimated 1.5 million people in the UK (2.4% of the population) have reported experiencing Long Covid symptoms.
The recovery time is different for everyone. The length of your recovery is not necessarily related to the severity of your initial illness, or whether you were in hospital.
According to the latest reports, Long Covid is most common in people aged 35-69 years, women, people living in more deprived areas, those working in health care, social care, or teaching and education, and those with another activity-limiting health condition or disability.
Common Long Covid symptoms include:
- Extreme tiredness (fatigue)
- Shortness of breath
- Chest pain or tightness
- Problems with memory and concentration ("brain fog")
- Difficulty sleeping (insomnia)
- Heart palpitations
- Pins and needles
- Joint pain
- Depression and anxiety
If new or ongoing symptoms do occur and they are causing you concern, you should always seek medical advice and support.
For more information and support you can apply to join the Long Covid Support Group on Facebook, which currently has more than 50,000 members.