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Friday 20 December 2019

HEALTH

Testing, testing

Tired and in pain, millions of us are turning to the poorly-regulated world of ‘functional medicine’ for (expensive) answers

By Eleanor Morgan

Pain is frightening. When we’re young, we run to a parent to soothe us. We want to be held, kissed and told that everything is alright. As we grow older, we learn to self-soothe, but we are still carrying around the same sensitive brains. Even as adults, pain taps into our most primal responses, making us feel vulnerable and isolated. The physical is emotional, and vice versa. But when pain becomes chronic and we can’t find anything to take it away, it can curdle the mind.

When we feel unwell, a basic tenet of our condition is that we want to know why. If we are experiencing pain, or other difficult symptoms like chronic tiredness, with no obvious cause, the discomfort is often amplified. If we know something is wrong but can find no ‘evidence’ to explain it, we may think: well, now what? 

Increasingly, it seems, we step into the unknown – and an expensive one, at that.

In the UK, where we have the shortest doctor’s appointments in Europe, a growing number of us – particularly women – are turning to the poorly-regulated global wellness industry for answers, which is now a $4.2 trillion market. People are choosing to be less reliant on conventional medicine and taking health into their own hands. An estimated 1.3 million UK consumers now spend £300 million a year on cannabidiol (CBD) products; a fascinating phenomenon given how little robust evidence exists to support the myriad health claims CBD users make for the oils. ‘Gut health’ has become a buzz term; we are becoming more interested in our gut microbiota, guzzling kefirs and krauts in our quest for optimal wellbeing.

The boom in wellness has seen a rise in its investigative arm, too. Functional medicine is a popular and profitable discipline seeking to identify and address the ‘root cause’ of disease. On paper, this means looking for abnormalities in our biochemistry. Practitioners include nutritionists, naturopaths, homeopaths and a handful of medical doctors, who invite us to take a journey of rigorous self-inspection. On offer are a wealth of endless, sophisticated-sounding and ‘personalised’ tests not available on the NHS. But functional medicine is not a protected title; you don’t need a medical qualification to practise and it is not compulsory to belong to any regulatory body.

Submitting to testing has become a proxy for self-care. Slashed budgets and overwhelming patient demand has resulted in increasing numbers of people feeling left behind, and looking elsewhere for answers. But the cycle of testing points to a truth that always was: within a medical establishment still focused on the measurable, biological aspects of illness, it is never enough to just say we feel bad. Without metrics and numbers to provide an explanation for how we are saying we feel, we must be mad.

Five years ago, 41-year-old Emma Williams lay on the bathroom floor in her Berlin apartment clutching her stomach. She wondered if she would ever not be in pain again. Over tea, she becomes tearful at the memory. “It seemed hopeless,” she says. Williams had been living in Berlin for a few years working as a kindergarten assistant. In time, a sense of isolation crept in.

She describes being in pain all the time; a “dull, constant aching in my stomach that worsened after eating. I could eat a raisin and suddenly feel like something was starting.” In Berlin, a colonoscopy and endoscopy revealed no gut abnormalities. Blood tests were normal and she was diagnosed with irritable bowel syndrome (IBS). She remained in pain. Two years ago, she returned to London and set about “getting to the bottom – as it were” of things, experimenting with removing dairy and gluten from her diet. To her frustration, she remained bloated and in pain after every meal.

Now exasperated, after NHS specialists said there was no more investigation they could do, Williams visited a nutritionist in central London who seemed to have the answers. He recommended a stool test copyrighted to Genova Diagnostics, a major functional testing laboratory used widely in the alternative medicine field. The test “assesses the root cause of most gut complaints” and costs £355. Her diagnosis was dysbiosis, a term used to describe unhealthy microbes and excess yeasts in the gut, for which he suggested taking an array of expensive supplements. He also suggested she try the low FODMAP diet, regularly recommended (including by NHS dieticians) for IBS sufferers. When the nutritionist told Williams there was “no reason she couldn’t start to feel normal again” she says she could have wept with relief. The cost was eye-watering, too, but it was a small price to pay to for answers.

Roughly 15 million people in the UK are living with a chronic health condition and half the population are in some kind of chronic pain. It is estimated that 17% of the population has irritable bowel syndrome (IBS), which is significantly more common in women than men. There is also evidence for the overlap of IBS and chronic pain disorders such as fibromyalgia, chronic fatigue syndrome and migraine being much higher in women, which points to an association with our fluctuating hormones. This kind of complexity is where functional medicine flexes its muscle.

For those suffering with symptoms like Williams’, a session with a Harley Street nutritionist can cost up to £300. You will have 75 minutes to lay out your problems, like an elaborate table setting, for analysis. Then come the tests – all at extra cost. The London Clinic of Nutrition offers The Optimal Health Package for £695, structured over three months, which includes various follow-up options and a handsome 10% discount on supplements and ‘bespoke herbs’ that they sell. Their functional testing can apparently “pick up disturbances in physiological functioning that conventional tests miss – because they’re either not sensitive enough or not looking for it”.

Troublesome bowels? The clinic may offer a GI-map stool test. £395. If you’re sapped of energy, the Thyroid Vital (FDX) blood test (“one of the most common and useful tests that we use in the clinic”), will cost you £335, plus £30 for a phlebotomist to draw your blood. These two tests, plus The Optimal Health Package, are £1,425. If it’s mooted that your fatigue could be explained by a build-up of toxins, a MycoTOX profile (a urine test looking for mould in your body) may be recommended. Add another £320. So far, £1,775. More tests (chronic Lyme disease?) may be offered. It is easy to see how, if we’re still feeling unwell and are encouraged by a well-meaning practitioner who listens to us, we could find ourselves head-first down a rabbit hole of investigation. Each test, dangling the prospect of precise answers, stokes the embers of hope.

London-based literary agent Victoria Hobbs found herself in a rabbit hole of medical self-investigation for eight years. “At around 40 I had a six-month period of insomnia. My engine was burning out,” she says. Her GP ordered blood tests. They showed that she had hypothyroidism (an under-active thyroid) – in theory, explaining her exhaustion – and she was prescribed medication to treat her hormone deficiency. But although things improved, she still didn’t feel well. “I was referred to an endocrinologist who investigated whether I was going into early menopause.” She wasn’t. “I felt like I was always coming down with something; an ominous feeling in my throat. I also had extreme brain-fog.”

After seeing the NHS endocrinologist, Hobbs felt like a door had closed. “I sensed I had to work out something for myself,” she explains. She started with a naturopath. Then an acupuncturist. Then a nutritionist. Then a detox clinic. Then hypnotism. Then another nutritionist “who did a urine test that showed I had high levels of mould.” After we meet, Hobbs forwards me an email she received after the test. “Not to alarm you but just so you can see that the mould is definitely something we need to address and are dealing with,” it read. If I had received the email, I’d have been alarmed.

Hobbs continues. “I then saw a private GP who had a lucrative sideline in treating [she does air-quotes] leaky-gut syndrome and did his fast, eating only white fish and avocado for two weeks…” she trails off. “The scale of wasted money, I just…” she sips her tea. “I feel so ashamed.” I try to reassure her that a perfectly human response to un-improving physical and emotional discomfort is to keep looking for answers. She takes a deep breath. Another private endocrinologist “diagnosed post-viral fatigue and said I should go to bed for a year” – not practical with a full-time job and two kids. “I walked away thinking that was it.”

Still unable to function properly, she returned to her NHS GP surgery a few more times. As a woman with a nebulous symptom like persistent tiredness who continued to ask for help, did she feel stigmatised? “Oh, absolutely. That I kept coming back, was middle-aged, tired and a bit overweight seemed to stand in the way of anything I had to say. ‘Of course you’re tired, you have kids and a job,’ they’d say, and no matter how many times I said, ‘I know, but this does not feel proportional’, the response was the same.”

Hobbs’s story is not unusual. There is now a robust body of literature that shows women are more likely than men to be mis-diagnosed or under-treated for their pain. Studies have shown that doctors often believe that women have a natural capacity for pain, and the male body default in medical research means that, at the most basic level, the evidence that informs medical training is already skewed. The result is that many women feel abandoned, dismissed and rushed and are increasingly turning to complementary and alternative medicine (CAM) – functional medicine practitioners, osteopaths, acupuncturists and more – for answers.

Now 48, Hobbs feels better than she has in years after being prescribed testosterone, progesterone and a T4/T3 mix by The London Hormone Clinic – a private clinic on Harley Street. We talk about trust and how much we place in those who seem to have all the answers when we’re vulnerable. “When more tests were offered, I thought: what if?

Feeding the do-it-yourself, ‘personalised medicine’ mentality are home health and wellness tests. In the last three years there has been a boom in start-ups that enable the health-curious to test their blood, urine, saliva or stool in the comfort of their home. It’s a neat concept: you collect your sample, send it off to a lab and get a doctor-verified report of the results pretty fast, along with guidance on what you can do to improve any abnormalities found. Invariably these are diet-related. LetsGetChecked, a Silicon Valley company, was founded in 2015. According to their website they have now performed 259,589 tests, picking up 10,263 abnormalities. I had never heard of them until adverts began appearing on my Instagram feed while writing this piece.

Hamish Grierson, co-founder of UK blood-testing startup thriva, tells me they had “ten customers a week when we started in 2016”. They have now processed “around 100,000” tests and the company turned over £2.2 million last year. The wider blood testing market has been predicted to be worth $62.9 billion by 2024. The language used in the marketing is enticing. “Improve your health, sleep, energy, mood and fitness,” says thriva’s homepage. The idea is that blood test kits can be used to identify – and address – simple abnormalities before they tip into illness.

“Wellbeing is a spectrum,” says Grierson, “and this trend is driven by a very clear portion of the population who want to be in the driving seat of their health.” I say I don’t quite understand. “Well, you’re either in a primary or secondary care relationship that is fleeting. When you are not interacting with those systems, i.e. not sick, you are considered to be well, with no place seeking to understand your health. This is where pejorative terms like ‘the worried well’ come in.” I can see his point. But could the service also attract people who haven’t found clear answers for their problems and feel compelled to keep digging and digging? “Yes,” he replies. “But all our tests require a brief history. If someone says they have been doing lots of tests, we explain it’s not for them. This has happened and we have refunded people.”

Thriva offer me a free test. I ‘build my own’ on the website, providing some health data and an explanation for why I’m testing: painful periods, IBS symptoms and mild lethargy (all true). It suggests I test my blood sugar, iron, thyroid levels, C-Reactive Protein (CRP), vitamin B9 and B12, cholesterol, liver function and vitamin D. This should have cost me £75. NHS GPs request near-identical general health profiles multiple times a day. Thriva also make the reassuring point that they use the same labs NHS trusts do. My kit arrives with two small vials to fill. I prick a finger with the lancet provided and milk it into them. One spills, splatting like cherry juice across my white desk, and I have to fill it again. Within 48 hours, thriva emails: “They’re here!” Everything was normal apart from a slightly raised level of CRP – a protein produced when there is inflammation somewhere in the body, such as with a bacterial or viral infection.

The doctor reporting on my results (an NHS GP – I looked her up) says: “In an otherwise healthy individual this is linked to an increased risk of heart disease. On this occasion, this may have falsely raised your estimated risk of heart disease… Your mildly elevated CRP levels may be due to an illness.” I’d had a vague sniffle the week of the test. Yet I found myself Googling ‘raised CRP levels’ and wondering about my heart as I kicked a ball across the park for my dog that afternoon. I exercise, barely drink and eat a mostly healthy diet. If my body was likely to correct this thing itself, did I really need to know?

Many doctors have raised concerns about biotechnology companies offering us the chance to pay for information that may not be helpful to us. This year, senior doctors lobbied for a crackdown on at-home genetic-testing kits from companies like 23andMe, following a surge of patients being wrongly told they are carrying dangerous mutations linked to cancer. Many warned that these tests place an increased burden on GP surgeries and NHS genetic clinics. Writing in the British Medical Journal, Professor Anneke Lucassen, president of the British Society for Genetic Medicine and a consultant in clinical genetics at University Hospital Southampton, says: “Genetic tests sold online and in shops should absolutely not be used to inform health decisions without further scrutiny. Finding a ‘health risk’ does not mean a person will go on to develop the health problem in question, while ‘reassuring’ results might be unreliable.”

A recent analysis of a chip used by these genetic testing companies showed that, when tests gave a positive result for BRCA mutations – in genes that produce tumour-suppressing proteins, increasing the risk of breast and ovarian cancers – it was more than likely to be wrong. Lucassen has described how one of her patients was scheduled for a double mastectomy after a positive test. When the test was re-done in an NHS laboratory, using more powerful genotyping techniques, it came back negative. The patient asked to have the operation anyway, to be on the safe side. The surgery did not take place, but Lucassen said her patient “wasn’t reassured by finding this was a false positive.” Once the seed of an idea that something could be wrong has been planted, it can be very difficult to stop it germinating.

While researching my book Hormonal, I visited a nutritionist to see how dietary changes may help my very physical PMS, because neither my GP or gynaecologist had ever explored what I put into my body in any detail. His manner made me feel like he had a genuine interest in helping me. After I’d reeled off my symptoms – anxiety, pain, constipation and bloating – his working diagnosis was dysbiosis. He recommended a urine test called Organix Comprehensive Profile from Genova Diagnostics, that would look at my cellular metabolic processes. £279. When I saw him again for my results, he described my abnormalities: an overgrowth of lactic acid-producing bacteria and excess yeasts. He said these pointed towards distorted signalling between the gut and the brain, but I’d need The GI Effects® Comprehensive Stool Profile (£355) to confirm. I also had a “slightly elevated” level of an inflammatory marker called picolinate, which was “associated with mild brain inflammation” that could be “corrected” with more oily fish.

Brain inflammation. It still hasn’t left me.

The nutritionist also suggested I do a month-long test with Genova Diagnostics that which would involve spitting into a sample pot every day for a month so my cortisol levels could be analysed in accordance with my fluctuating hormone levels. It costs £235.

Cortisol is known as the ‘stress chemical’ for good reason. Stress is a precursor to the fight-or-flight response; what we experience when we encounter a threat and need to deal with it or get away. It makes us tense, alert and ready for action. The bodily effects are well-known; increased heart-rate, pale skin, stomach-upset, tense muscles, etc. But these things don’t happen instantly. Neuroscientist and author, Dr. Dean Burnett, explains: “Cortisol is secreted into the blood to essentially prepare for the fight-or-flight response. Our big brains can be stressed by paying bills, worrying about the environment or our health: all recognised as dangers, but they don’t go away.”

But when the fight-or-flight response never occurs, it becomes harmful because the stress is never discharged. This causes widespread tension and suppresses the immune system. The result is that we become more vulnerable to illnesses and take longer to recover. But when companies like thriva offer “a clear picture of how stress could be affecting your health” with cortisol tests, requiring several saliva samples throughout one day, the results are going to be inherently limited. There are far too many wider variables to consider. “A snapshot of cortisol levels doesn’t tell you much at all,” says Burnett. “It’s like trying to work out someone’s age from the amount of smoke produced by the candles on their most recent birthday cake.”

It would be incorrect to say that all the science behind testing that takes place in functional medicine is untrustworthy. However, bold claims are extrapolated from the smallest nuggets of valid data. I dug deeper into my nutritionist’s picolinate finding and discovered that, while it is linked to some elements of brain function like improving serotonin function in diabetes, the studies use rat models, not humans. “How someone would determine brain inflammation with a urine sample is something I can’t answer,” says Burnett. The phrase seems almost designed to be vague enough to avoid legal action while being genuinely unsettling to anyone hearing it who doesn’t understand the properties of the brain.

My nutritionist used the Genova Diagnostics lab for my testing, as do thousands of practitioners across the UK and Ireland. The main headquarters are in Asheville, North Carolina, but the European base is in Surrey. Statements of income available through Companies House show the company made a profit of £27,307 in 2017. In 2018, they made almost 11 times as much: £305,781.

After a little digging online, it did not take long to discover that the lab’s diagnostic methods are shrouded in serious doubt. So many of the diagnoses offered in functional medicine stem from studies with dubious methodology. Terms like ‘adrenal fatigue’, ‘leaky gut syndrome’ and ‘sluggish liver (to be ‘cured’ with a detox) are couched in pseudoscience, yet sound compelling enough to the layperson to warrant further investigation and treatment. However, as Ben Goldacre explores in his book Bad Science, just because a study has appeared in a journal does not make it credible. That a particular substance can be identified in the body does not always mean the results are clinically meaningful.

Although doctors have written about how too many tests can do patients more harm than good, the prospect of more precision and more information can become compulsive. Once we have invested time and money in something we become far more likely to defend it, expressing confirmation bias.

A keen cynic may wager that the test-providers are aware of this. Conversely, some senior NHS doctors also believe that the NHS often abandons patients with chronic conditions when the options for testing run out. Professor Anton Emmanuelle, a consultant neuro-gastroenterologist and director of the GI Physiology Unit at University College Hospital (UCH), is one such doctor. “When we can’t be cleverly ordering tests for people, we too often end up leaving them behind. More often than not these patients are women.”

I visit Emmanuelle at UCH on a rainy afternoon. He is a tall, softly-spoken man with slow gesticulations and an immediate air of kindness. Among the egg custard-yellow walls of his GI unit, Emmanuelle and his team offer physiological and psychological interventions for people – referred from across the country – with functional gut disorders; that is, those with distressing symptoms that don’t stem from biochemical abnormalities.

I am interested in Emmanuelle’s opinion on the stool tests now routinely offered by nutritionists with a view to improving skin, sleep, digestion, mood and more. Stool tests can also be done at home with new companies like Atlas Biomed. He winces. I ask if a one-off sample of our poo would, like a one-off cortisol test, only ever give us a snapshot. “Absolutely. It is a moment in time; like me defining your constitution by the clothes you’re wearing today. There is also no data that 100% tells us what’s in our poo is relevant to our gut function. I have no doubt that microbiota are of critical importance to gut health, but we don’t fully understand it. Hopefully in our lifetime someone will unlock it, but in the meantime we are left with a space that is filled by charlatans.”

We quickly get onto the subject of over-testing. “If you took a big sample of people from Oxford Street at any one time and tested for a host of abnormalities, many would have them,” he says. “But that’s on that day at that time. The body is constantly healing itself. Finding an abnormality outside normal ranges does not always mean a person is ill.”

He mentions a hydrogen breath test offered by a functional clinic in central London to test patients for lactose intolerance. It involves fasting the night before. You then breathe into a balloon-like bag, which tests how much hydrogen is present. Then you drink a lactose solution, after which your breath is tested every 15 minutes for two to three hours to see how your hydrogen levels change. Large amounts of hydrogen indicate lactose intolerance, because intolerance causes bacteria in the colon to produce more hydrogen than normal. “If I give a healthy person enough lactose I will get a positive test,” Emmanuelle says. “Our positive testing [at UCH] is 5-8% year-on-year. The published data from this clinic was 85-90% positive. Either they are incredibly good at selecting patients or something is awry.”

The reason behind the high number of positive results? The clinic was, Emmanuelle says, giving the patients “probably the equivalent of a kilo of camembert…I lobbied for them to abide by our guidelines for testing and guess what? Their positive results fell to about 8% overnight.”

He pauses for air. “I had a patient who spent £2,500 there before she was referred to us. You want to strip £2,500 off the walls and put it in her hands. But we are complicit,” he gestures towards the rest of the hospital. “We’ve allowed this to happen. I am an ardent socialist from an illiterate Tamil family who came to this country as an immigrant. I strongly believe in paying taxes and the health service, but patients deserve more.” Of what? “Time and compassion,” he says. “Time, validation and bloody compassion.” Precisely what CAM practitioners offer. “Yes, but we are also doing that here. The trouble is that there aren’t enough progressive, multidisciplinary services in a time-strapped, financially-drained system to really meet people’s needs.”

Emma Williams feels the best she has in years. “I am almost pain-free,” she tells me, a smile slowly spreading across her face. “The dietary changes helped, but the biggest change has been meditation.” Two years ago, she started using the Headspace app. “I liked the company of his voice and having a programme to follow. It sounds cheesy, but the daily discipline has shifted my head.” Williams can now observe patterns of thought and the physical sensations that accompany them. “I know that when I am anxious, my stomach discomfort starts. I didn’t have that awareness before.”

In time, Williams made the connection between how – even in Berlin – she wouldn’t feel the pain in absorbing social situations. Also, how the sense of isolation chimed with formative experiences of being shamed as a child. In the last two years she has seen a voice coach and has begun training to be a teacher – a long-held ambition. She explains how she felt she had been looking for the permission, from another human being, to stop fighting the pain. Guided meditation allowed her to do that. Personally, it took me 32 years to find a therapist who would help me start truly connecting anxious thoughts with physical distress (mostly in the gut) and understand the attempts I’ve made at waging war with my inner life.

Williams asks if I ever watched the first series of Top of the Lake. We immediately quote the same scene. GJ, played by Holly Hunter, is a white-haired spiritual leader for a tribe of disillusioned, traumatised women living in shipping containers in a windy New Zealand pasture. In a scene where an emotionally depleted cop (Elizabeth Moss) lays at her feet and says, “I don’t know how to live anymore,” GJ, barely looking up, says: “Follow the body. It will know what to do.” Our bodies are often telling us something. Sometimes, what we are most in need of is another human being to tell us it’s OK to really listen.

 

All photographs Getty Images