At her sickest, Kira Love could only spend a few minutes at a time out of bed. Glandular fever, abdominal cramps and inflammation left every joint in her body aching.
Over the course of two years in her early 20s, Kira went from vibrant and active to ‘a shell’ she hardly recognised.
‘It was just complete mental and physical exhaustion,’ she told the Daily Mail. ‘There was extreme pain in my body every time I tried to move around.’
After countless doctor appointments – where, Kira says, her symptoms were treated in isolation without examination of any underlying cause – she was eventually diagnosed with chronic fatigue syndrome by a holistic doctor in Singapore.
Fast-forward to today and Kira claims she lives virtually symptom-free.
One medical doctor, she says, was so amazed by her management of her condition that he believes she is among only a handful of people to achieve such results.
Chronic fatigue syndrome – also known as myalgic encephalomyelitis or ME/CFS – is a multi-system illness that has been misunderstood for years by the medical community, though this is gradually starting to change.
Doctors were amazed by Kira Love’s management of her chronic fatigue syndrome (CFS) symptoms through lifestyle changes
‘ME/CFS is a very diverse condition that involves so many different organs,’ explains Associate Professor Bernard Shiu, who recently started a new RACGP Specific Interests group to share good management approaches for conditions such as ME/CFS, Long COVID, and postural orthostatic tachycardia syndrome (POTS).
The Energy-Limiting and Post-Infection Conditions (ELPIC) network is specifically aimed at understanding more about these misunderstood conditions.
‘It’s very complex and quite debilitating to patients. And the diagnosis is very difficult because it evolves over time with a relapsing nature, so patients get better, and then they don’t get better. And it’s very difficult even for doctors to be able to spot that and say, “Hey, that is something more than just you being tired,”‘ says Associate Professor Shiu, a pioneer in the diagnosis and treatment of these conditions.
Shiu explains that a defining feature of ME/CFS is post-exertional malaise (PEM) – a ‘crash’ where symptoms get significantly worse after even minor physical or mental activity, like a short walk or a focused conversation.
‘You might just have been at a child’s birthday party, making small talk with other parents, and it will wipe you out to the point of exhaustion afterwards,’ Shiu says.
Unlike normal fatigue, this crash is often delayed by 24 to 48 hours and is not helped by sleep or rest.
Symptoms can also include brain fog, unrefreshing sleep and body malfunction across multiple systems, like dizziness, heart palpitations and trouble regulating body temperature.
Long dismissed, recent breakthroughs and a total overhaul of national guidelines in Australia are finally moving the needle toward biological recognition of these conditions – and better quality of care.
Everyday tasks became overwhelming when Kira (above) was diagnosed with CFS in her 20s
New clinical guidelines from the National Health and Medical Research Council (NHMRC) are in the review stage, and are expected to improve patient care and awareness among medical professionals.
And while CFS/ME was once a diagnosis of exclusion – meaning doctors had to rule out virtually everything else in order to diagnose someone – researchers just this month have identified a faulty channel in the immune cells of people with CFS/ME, meaning work can start on a diagnostic test and, eventually, potential treatments.
But this was not the case when Kira, from Queensland, Australia, was first diagnosed in her 20s – and, while she might have had a name for what was going on with her, doctors couldn’t offer much more in the way of treatment options at the time.
‘Simple, everyday tasks became so overwhelming,’ she says. ‘And the people around you, they think you’re a hypochondriac or a victim. And you really do get into that victim state of consciousness, because life just feels so heavy.
‘I just remember feeling so hopeless, to be honest, especially because I was such a vital person leading up to this. I hit rock bottom after I had to have my tonsils out and I had a particularly horrible bout of symptoms.
‘It was like my body had turned against me. I just had this moment where I felt like I was dying. That might not make sense to anyone else, but in my body, I knew it to be true.’
Unsatisfied with the lack of help from doctors, Kira researched lifestyle interventions. A lifelong foodie, she started by trying to clean up her diet and focus on incorporating fresh, nutrient-rich foods.
‘I immediately removed all kinds of sugar in the short term, even healthier types of sugar, so that I could get the bacteria growth in my body under control,’ said Kira, whose previous lifestyle focused heavily on the wrong kinds of food.
After Kira changed her diet, quit her unfulfilling job and ended a bad relationship, she says it was like ‘a cloud lifted from my mind and body’
‘I started eating whole foods to promote healthy bacteria growth in my body – that was probably the most important thing – and then I looked at stress.’
Kira said she was feeling stuck and unfulfilled in a number of areas of life at the time she was diagnosed in her 20s.
‘I was working a 9 to 5 that lacked fulfilment, lacked creativity,’ she said.
‘I was going to a soul-sucking job every day that had no emotional revenue, and I dreaded getting up in the morning. I was in a relationship that did not support my best self – I was also carrying the emotional burden of that.’
Within a few months of changing her diet, Kira noticed a drastic reduction in her chronic fatigue symptoms. Sensing progress, she quit her unfulfilling job, and also left the bad relationship.
‘It was like the cloud lifted from my mind and body,’ she says.
‘I could think clearly,’ says Kira. ‘I had my energy back. My body wasn’t in pain any more’
‘I could think clearly. I had my energy back. My body wasn’t in pain any more. And I felt hope again. That’s when it hit me how incredibly powerful our food choices are in shaping our body and our experience of life. Food is either fuelling your vitality, or dismantling it, and it flows into every area of our lives.
‘Every part of my life got better when I started nourishing my body well.’
Kira’s autoimmune markers – which at one point had been elevated to numbers in the hundreds – reduced significantly as a result of her lifestyle and diet changes.
‘I track my markers,’ she explains, ‘and I saw a doctor about five years ago who couldn’t believe the results. He told me I was one of three humans he knew who had been able to achieve that drastic reduction through lifestyle interventions.’
Associate Professor Shiu says microbiome research is an exciting area of innovation when it comes to understanding ME/CFS, and that lifestyle interventions like Kira made have greatly benefited some patients.
‘Currently, there’s a lot of research going on in terms of using the gut microbiome or altering the gut bacteria patterns in order to fight off the ongoing inflammation that is happening,’ he explains.
‘The theory behind eating certain types of food that lower the immune response is that they can help energy levels, and that is true. However, we haven’t been able to identify a particular microbiome that helps across the board.
‘Right now, it is a bit of hit and miss. Patients will report back to us saying, “Hey, I find this group of foods actually helps,” and that is very, very true. But at the moment it’s still case by case on what works for which patient.’
Shiu – who is passionate about bringing a multidisciplinary approach to the treatment of ME/CFS that includes nutritionists, physiotherapists, general practitioners and even rheumatologists – is keen to acknowledge that medicine hasn’t always got it right when it comes to patients who are suffering.
‘I think it’s really important to say that a lot of people with ME/CFS have spent years feeling dismissed by doctors,’ he says.
‘I can understand how difficult that must be for them.
‘I just want to acknowledge that the RACGP is very actively trying to help in this space. It’s why we set up the ELPIC, to try to help our GP colleagues to identify patients and help them with proper, evidence-based approaches.
‘At the same time, we want to advocate for the patients who are suffering in silence, to make sure they don’t have to. They can approach their GPs and tell them, “I think this might be ME/CFS,” and that can form the beginning of their recovery.’
Kira’s improved health spurred a new career, which has included being a contestant on MasterChef Australia, the release of a cookbook, and coaching women in leadership and nutrition.
‘I feel so much inspiration and motivation these days, and I get so much emotional revenue from the work I do,’ she says.
‘I honestly feel so blessed to be in my position.
‘I am now living an energised, grateful, fulfilled and passionate life, which is a far cry from the lethargic, depressed and unmotivated state I was in back then.
‘Being more aware of my body, living mindfully and being prepared to meet its needs are what is leading me towards a happier and healthier path.’
Not a cure, but an ‘insurance policy’
Kira knows that, in spite of how well she feels, CFS/ME is something that can flare up again – and has threatened to do so at various stages throughout her life.
‘I don’t want to think of it as a threat – that’s quite a negative view – but to know it’s always there. I take notice of the way my body feels when I’m not taking good care of it – that’s a motivation to keep working on the lifestyle interventions that I know work.’
‘Honestly, I am thankful for my chronic fatigue in a way.
‘It was the catalyst for building the life I have now, and I don’t think I would have been motivated to make those changes without such a drastic reason.’
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