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		<title>Margaret McCartney and Deborah Cohen, a writer for UnHerd</title>
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	<title>Margaret McCartney and Deborah Cohen, a writer for UnHerd</title>
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					<title>Inside the Lyme disease industrial complex</title>
					<link>https://unherd.com/2026/10/inside-the-lyme-disease-industrial-complex/?edition=us</link>
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										<unherd:main_theme>Investigation</unherd:main_theme>
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						<![CDATA[Margaret McCartney and Deborah Cohen]]>
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							<![CDATA[<p><strong>Margaret McCartney </strong>is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.</p>
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															<unherd:author_bio>
						<![CDATA[is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.]]>
					</unherd:author_bio>
										<pubDate>Mon, 05 Oct 2026 23:01:47 +0000</pubDate>
					<updated>Tue, 06 Oct 2026 05:00:53 +0000</updated>
							<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Lyme Disease]]></category>
		<category><![CDATA[Lyme wars]]></category>
		<category><![CDATA[Science]]></category>
		<category><![CDATA[Society]]></category>
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								<![CDATA[Private clinics exploit uncertainty]]>
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								<![CDATA[<p><span style="font-weight: 400">Last summer, a section of Justin Timberlake’s fans began to complain that the “SexyBack” singer wasn’t giving it his all on his Forget Tomorrow tour. </span><span style="font-weight: 400">At various shows he appeared less energetic than usual and at one particularly lackluster European date, he held out his microphone for the audience to sing “Can’t Stop the Feeling!” as if he couldn’t quite manage it himself. “Dude took a day off on stage…” one fan complained on </span><a href="https://people.com/fans-criticize-justin-timberlake-latest-performance-after-having-audience-sing-11777389?utm_source=chatgpt.co" target="_blank" rel="noopener"><span style="font-weight: 400">TikTok</span></a><span style="font-weight: 400">.</span></p>
<p><span style="font-weight: 400">When the tour finally ended, Timberlake took to </span><a href="https://www.instagram.com/p/DMx2h6Sgojo/?img_index=1" target="_blank" rel="noopener"><span style="font-weight: 400">Instagram </span></a><span style="font-weight: 400">to explain himself to his 69 million followers. He revealed that he had been diagnosed with Lyme disease, “which I don’t say so you feel bad for me but to shed some light on what I’ve been up against behind the scenes”. The tick-borne infection, he said, had been “relentlessly debilitating, both mentally and physically”. At times he had gone onstage “in a massive amount of nerve pain” or struggling with “crazy fatigue or sickness”. The response duly modulated from scorn to sympathy — though still mixed for some with skepticism.</span></p>
<p><span style="font-weight: 400">Timberlake is far from the only celebrity to share his Lyme story on social media in recent years. The Canadian singer Avril Lavigne revealed her diagnosis in 2015, describing how the disease had left her bedridden for two months, unable to move or even speak. She subsequently founded the </span><a href="https://theavrillavignefoundation.org/" target="_blank" rel="noopener"><span style="font-weight: 400">Avril Lavigne Foundation</span></a> <span style="font-weight: 400">to help combat the disease, which is thought to affect around half-a-million Americans each year — and in terms of raising awareness, she has been extraordinarily successful. Other celebrities who have reported having Lyme disease include Bella Hadid, Shania Twain, Alec Baldwin, Ben Stiller and Justin Bieber. </span></p>
<p><span style="font-weight: 400">Some have described relatively straightforward infections, while others talk about years of unexplained illness, eventually attributed to Lyme and treated outside mainstream medicine. Yolanda Hadid, Bella’s mother, has documented an increasingly </span><a href="https://lymescience.org/yolanda-hadid/" target="_blank" rel="noopener"><span style="font-weight: 400">baroque</span></a> <span style="font-weight: 400">range of treatments involving a “healing cave”, hyperbaric oxygen chambers, coffee enemas, various stem cell treatments, hundreds of supplements, plus a “parasite lab” in a guest bathroom, which she uses to scrutinize her own feces.</span></p>
<div class="ref-ar"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2023/10/2023-10-10-unherd-zoe-patch-pub.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">More from these authors</span></a><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>We need to talk about ZOE</h5></a><p class="author"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Deborah Cohen &amp; Margaret McCartney</a></p></div></a></div>
<p><span style="font-weight: 400">These celebrity accounts have brought Lyme disease to a huge audience. But they’ve also drawn attention to a question at the center of what has become a highly fractious debate. When someone has persistent, debilitating symptoms but no convincing evidence of an ongoing <em>Borrelia</em> infection, should Lyme still be considered the cause? Should it still be treated as an active infection? And there is a broader question too: what explains the increasing prominence of the disease in public discourse, given the relatively low overall number of confirmed cases? </span></p>
<p><i><span style="font-weight: 400">Ixodes</span></i><span style="font-weight: 400"> ticks tend to live in woodland and long grass, waiting for a passing animal or human to brush against them. Their numbers fluctuate from year to year, although the UK Health Security Agency (UKHSA) says that their geographical distribution across the UK has widened. If you are unfortunate enough to stray too close, the tick will attach itself to you, embed its mouthparts in your skin and feed for several days. If the tick is carrying </span><i><span style="font-weight: 400">Borrelia</span></i><span style="font-weight: 400"> bacteria, there is a chance you will contract <em>Lyme borreliosis</em>, aka Lyme disease: days or weeks later a red or pink rash may spread from the site, sometimes forming the characteristic “bullseye” appearance associated with Lyme disease. </span></p>
<p><span style="font-weight: 400">However, it is a fairly small chance. In Europe, fewer than 4% of ticks are infected, and only 1-5% of bites from infected ticks result in</span> <a href="https://ukhsa.blog.gov.uk/2026/06/30/what-are-ticks-and-how-can-you-avoid-being-bitten/" target="_blank" rel="noopener"><span style="font-weight: 400">Lyme disease</span></a><span style="font-weight: 400">. Put simply, most ticks are not infected and even when they are, most bites do not lead to Lyme. If you do contract Lyme, doctors can prescribe antibiotics, usually doxycycline. If it’s left untreated, however, it can spread to other parts of the body and cause neurological, cardiac and joint problems. </span></p>
<p><span style="font-weight: 400">The difficulty lies in establishing a Lyme diagnosis. The rash doesn’t always appear — meaning doctors must rely on symptoms and blood tests — and these often do not give a clear answer. In England, 1,168 acute cases of Lyme disease, including those with neurological symptoms, were confirmed by laboratory testing in 2025. That was up on 2024, but similar to 2023. Nevertheless, the true number is likely higher because many people are diagnosed and treated without a blood test.</span></p>
<p><span style="font-weight: 400">This points to the difficulty of establishing who has Lyme disease and who doesn’t — and it’s partly this ambiguity that has led to what some have called the “</span><a href="https://www.bmj.com/lookup/doi/10.1136/bmj.39363.530961.AD" target="_blank" rel="noopener"><span style="font-weight: 400">L</span><span style="font-weight: 400">yme wars</span></a><span style="font-weight: 400">”: a long-running dispute about the boundaries of the disease, how it should be diagnosed, and whether persistent symptoms represent the long aftermath of a tick-borne infection — or something else altogether. </span></p>
<p><span style="font-weight: 400">At the center of the “Lyme wars” are two very different approaches to diagnosis and treatment. In the US, the Infectious Disease Society of America (IDSA) recommends defined courses of antibiotics and advises against further treatment for people with ongoing symptoms but no evidence of active infection; NHS guidance is broadly in line with this approach.  </span></p>
<p><span style="font-weight: 400">The International Lyme and Associated Diseases Society (ILADS), meanwhile, argues that Lyme can be difficult to diagnose and that conventional tests may miss infection. Its guidelines allow longer treatment and give doctors greater latitude to prescribe further antibiotics when symptoms continue. This is the framework often cited by private practitioners in the UK.</span></p>
<p><span style="font-weight: 400">Supporters say that the ILADS approach helps patients failed by conventional medicine. However, it also makes Lyme extremely difficult to rule out. Any unexplained symptom — fatigue, pain, tinnitus, muscular aches, memory problems. heart palpitations, visual disturbances, problems with speech, mood and sleep</span> <span style="font-weight: 400">— may be attributed to Lyme, when of course these symptoms can be caused by a very wide number of conditions, serious or otherwise. If such symptoms persist after treatment, it is not necessarily taken as a sign that Lyme is not the cause — and can instead be interpreted as evidence that more antibiotics are needed.</span></p>
<p><span style="font-weight: 400">In the US, the dispute has even reached the courts. In 2006, Connecticut Attorney General Richard Blumenthal launched an antitrust investigation into the IDSA’s Lyme guidelines over alleged conflicts of interest and the exclusion of alternative views. IDSA agreed to an independent review, which ultimately left its recommendations essentially intact.</span></p>
<p><span style="font-weight: 400">Then, in 2017, a group of patients sued the IDSA guideline authors and health insurers, alleging they had conspired to restrict chronic Lyme treatment to avoid paying for longer courses of antibiotics. The case, which included antitrust and racketeering claims, was eventually dismissed. But it encapsulated the way that the argument has become about more than how long to give antibiotics. It is also about how much evidence is sufficient to diagnose an infection and who gets to make that judgment.</span></p>
<p><span style="font-weight: 400">For some, a diagnosis of Lyme disease explains years of multiple, debilitating symptoms. Many patients, however, say they have been dismissed or “gaslit” when doctors cannot find an explanation for their symptoms — a situation familiar from debates around myalgic encephalomyelitis, also called chronic fatigue syndrome (or ME/CFS) and, more recently, Long Covid. </span></p>
<p><span style="font-weight: 400">The medical disagreement, however, is not over whether the symptoms are real. It is over whether an active, ongoing </span><i><span style="font-weight: 400">Borrelia</span></i><span style="font-weight: 400"> infection provides an explanation for these symptoms. This is why many doctors are warning that people are being diagnosed using unproven tests and sold costly treatments that don’t work and can cause harm. </span></p>
<p><span style="font-weight: 400">It’s no surprise that this disagreement has been amplified on social media, where there is a thriving community of Lyme influencers, podcasters and content creators — including many who will persuade people that their brain fog or low energy levels are the result of undiagnosed Lyme. A few share some fairly outlandish conspiracies. One viral post we found claimed that Lyme was, in fact, man-made — part of a Cold War-era “entomological warfare” program that went wrong. </span></p>
<p><span style="font-weight: 400">Many Lyme support groups and charities are well aware of the poor science circulating and are trying to counter it. But alongside them are accounts promoting alternative tests and treatments, from prolonged courses of antibiotics and intravenous drugs to restrictive diets, hyperbaric oxygen and herbal remedies. Some promote bee-venom therapy, in which people deliberately sting themselves with bees. </span></p>
<p><span style="font-weight: 400">In September 2025, Bella Hadid posted photographs that attracted more than two million likes. In one, she lies in a European clinic, pale and swollen, her blood running through tubes into what appears to be a filtering machine. In </span><a href="https://www.instagram.com/p/Cvmz8ilAcxx/" target="_blank" rel="noopener"><span style="font-weight: 400">another</span></a> <span style="font-weight: 400">post from two years earlier, an intravenous catheter protrudes from her arm beside blood-soaked swabs. “Thankful to my mommy for keeping all of my medical records, sticking by me , never leaving my side, protecting, supporting , but most of all, believing me through all of this,” she wrote.</span></p>
<p style="text-align: center"><strong>***</strong></p>
<p><span style="font-weight: 400">Much of the controversy stems from the difficulty of testing for Lyme. The bacteria are hard to detect directly in the blood, so standard tests instead look for antibodies produced by the immune system in response to infection. Those antibodies can take time to appear. “Patients with a very early infection may not have detectable antibodies and therefore have a negative test,” says Dr Christina Petridou, an infectious diseases and microbiology consultant who works for the NHS and the UK Health Security Agency. She is also clinical lead for Lyme disease at its Rare and Imported Pathogens Laboratory.</span></p>
<p><span style="font-weight: 400">There is nothing unusual about a diagnostic test having limitations. It is always possible to repeat antibody tests later and look for changes. The difficulty comes when people have symptoms they believe</span> <span style="font-weight: 400">are caused by the infection — but in the absence of clear evidence this is the case. One Instagram post encapsulates the problem. Its author had repeatedly tested negative for Lyme but believed the infection had become dormant. Eventually, they found an “integrative” clinic offering “cellular testing” and intravenous vitamins as treatment. </span></p>
<p><span style="font-weight: 400">There are many such private clinics in the UK, US and Germany; Petridou says she has seen patients who have spent large sums on tests that are not recommended for diagnosing Lyme disease. A 2022 study published in </span><a href="https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(22)00205-5/abstract" target="_blank" rel="noopener"><span style="font-weight: 400"><em>Lancet</em> Infectious Diseases</span></a><span style="font-weight: 400"> found that these tests were so poor at distinguishing people with Lyme from those without it that they were “unfit for clinical use”. This means that many people end up being told they have chronic Lyme in the private sector — but on the basis of a discredited test. </span></p>
<p><span style="font-weight: 400">For Stella Huyshe-Shires, chair of the UK patient charity Lyme Disease Action, this is a familiar problem. Her organisation has “been countering misinformation for well over a decade”, she says. She is particularly wary of celebrities sharing their Lyme journeys. “In every country there are two sorts of group [sharing information about] Lyme — one who go on about evidence and the other who do better on social media. The poor charity that sticks to evidence doesn’t get the likes, or the coverage,” she says. </span></p>
<p><span style="font-weight: 400">Getting the diagnosis wrong can have serious consequences, too. “We have come across patients who have developed significant side effects due to unconventional treatments,” says Petridou, citing protracted diarrhea from </span><i><span style="font-weight: 400">Clostridium difficile</span></i><span style="font-weight: 400">, infections from intravenous drips, and antibiotic-related side effects. Moreover what is taken to be chronic Lyme disease often turns out to be something else: sleep apnea, multiple sclerosis, fibromyalgia, lymphoma or even lung cancer. </span></p>
<div class="su-pullquote su-pullquote-align-left">&#8220;What is taken to be chronic Lyme disease often turns out to be something else: sleep apnea, multiple sclerosis, fibromyalgia, lymphoma or even lung cancer.&#8221;</div>
<p><span style="font-weight: 400">A Royal Liverpool University Hospital study found that </span><a href="https://academic.oup.com/qjmed/article-abstract/105/6/537/1560675?redirectedFrom=fulltext&amp;login=false" target="_blank" rel="noopener"><span style="font-weight: 400">just 27 out of 115 patients referred </span></a><span style="font-weight: 400">with possible Lyme disease were eventually diagnosed with it. Many had already been treated for it, including at least 53 unnecessary courses of antibiotics prescribed outside the NHS. “As medicine advances, snake oil salesmen advance as well,” laments Dr Alastair Miller, one of the Liverpool study’s authors. </span></p>
<p><span style="font-weight: 400">But he is sympathetic. When he treats an HIV patient, for example, he can show the patient their viral load and demonstrate that their treatment is working. Since there are no biomarkers for chronic Lyme disease, he has less to go on. He recalls telling patients: “I don’t understand why you’ve got your symptoms.” Those consultations could take 45 minutes compared with 15 minutes for HIV. “I think it is largely down to frustration and the lack of treatments and the lack of understanding,” he says of the hostility around chronic Lyme. Doctors, he acknowledges, “have been dismissive in the past”.</span></p>
<p><span style="font-weight: 400">One of the few things Miller could offer was cognitive behavioral therapy (CBT) and graded exercise — which have often been prescribed for patients with ME/CFS, which often presents similar symptoms. However, those options have narrowed. NICE’s latest ME/CFS guidelines advise against graded exercise therapy and say CBT should not be presented as a cure. The review was bitterly contested, with accusations of lobbying by patient groups; many members of the guideline committee resigned in protest. </span><span style="font-weight: 400">Miller argues that the result has left NHS doctors with very little to offer people with chronic fatigue, which inevitably pushes them online where there are plenty of private clinics ready to take their money. </span></p>
<p style="text-align: center"><strong>***</strong></p>
<p><span style="font-weight: 400">If you show up at your NHS GP in Britain with suspected Lyme disease, you will generally be treated according to NICE guidelines with a short course of antibiotics. However, some private clinics tend to be more informed by the broader ILADs guidelines. “The medical professional may find it hard to say, ‘We don’t have an answer’,” Huyshe-Shires says, “especially when the patient has to pay a fee.”</span></p>
<p><span style="font-weight: 400">One private clinic offering Lyme treatment aligned with the ILADs guidelines is Breakspear Medical in Hemel Hempstead. Its website describes individual treatment plans that can include intravenous and combination antibiotics. Breakspear Medical is a regulated clinic employing GMC-registered doctors, and has previously been judged by the Care Quality Commission to provide safe, effective and evidence-based care. But that does not mean that every test or treatment it offers has been independently validated: the CQC assesses the safety and quality of medical services rather than adjudicating scientific disputes over Lyme diagnosis or prolonged antibiotic treatment. The distinction matters because the GMC has investigated doctors who used unvalidated Lyme tests and unconventional treatments — showing that professional regulation and scientific consensus are not necessarily the same thing. </span></p>
<p><span style="font-weight: 400">Australia has an even more unusual situation. It has an active Lyme Disease Association and a lively online community of people who identify as having Lyme. However, it has no Lyme disease, at least officially</span><span style="font-weight: 400">. </span><span style="font-weight: 400">National surveys have found no </span><i><span style="font-weight: 400">Borrelia burgdorferi</span></i><span style="font-weight: 400"> — the bacterium that causes classical Lyme disease — in Australian ticks.</span></p>
<p><span style="font-weight: 400">Australian health authorities recognize that some Australians may acquire Lyme on their travel overseas, but say there is no evidence of local transmission. The Lyme Disease Association of Australia disputes this, pointing to people who became ill after local tick bites and later tested positive at overseas laboratories. </span></p>
<div class="ref-ar"><a href="https://unherd.com/2025/10/meet-the-black-mould-truthers/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2025/10/meet-the-black-mould-truthers/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2025/10/Jordan_Peterson_32590076658.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2025/10/meet-the-black-mould-truthers/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">Suggested Reading</span></a><a href="https://unherd.com/2025/10/meet-the-black-mould-truthers/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Meet the black mould truthers</h5></a><p class="author"><a href="https://unherd.com/2025/10/meet-the-black-mould-truthers/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Poppy Sowerby</a></p></div></a></div>
<p><span style="font-weight: 400">Miller thinks this helps explain why the argument has become so heated. “The conditions where you don’t have a biomedical explanation and an obvious pharmacologic treatment have a tendency to become even more polarized,” he says.</span></p>
<p><span style="font-weight: 400">When Justin Timberlake says he has been suffering from Lyme, we don’t know how diagnosis was reached or what tests were used</span><span style="font-weight: 400">.</span><span style="font-weight: 400"> Likewise, when Bella Hadid said on social media in 2023 that “the little me that suffered would be so proud of grown me for not giving up on myself”, having declared herself “finally healthy” after 100 days of intensive medical treatment — there is no real way </span><span style="font-weight: 400">of knowing what treatments she used or what worked and what didn&#8217;t</span><span style="font-weight: 400">. Indeed, only this summer, she announced that the Lyme had returned in the form of severe fatigue, pain, brain fog and anxiety. </span></p>
<p><span style="font-weight: 400">It is completely understandable why people who have been ill for years without an explanation are drawn to the Lyme community. Finding others with similar experiences can bring validation and support when medicine has offered few answers. </span><span style="font-weight: 400">But uncertainty also creates opportunities for people who claim to have those answers. Private clinics offer tests of questionable value and treatments that may be unnecessary; influencers can spread compelling stories of illness and recovery to huge audiences.</span></p>
<p><span style="font-weight: 400">In that sense, Lyme tells a much broader story about health in the social media age. Personal experience can travel further than scientific evidence, and uncertainty can quickly acquire a diagnosis, a community and a commercial market around it. For people who are genuinely suffering, false certainty may ultimately be no kinder than having no answer at all.</span></p>
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					<title>The truth about private health scans</title>
					<link>https://unherd.com/2025/01/the-truth-about-private-health-scans/?edition=us</link>
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										<unherd:main_theme>Investigation</unherd:main_theme>
					<dc:creator>
						<![CDATA[Margaret McCartney and Deborah Cohen]]>
					</dc:creator>
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																<unherd:article_ranking>3</unherd:article_ranking>
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							<![CDATA[Private scans are a nightmare for the NHS.]]>
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							<![CDATA[<p><strong>Margaret McCartney </strong>is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.</p>
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															<unherd:author_bio>
						<![CDATA[is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.]]>
					</unherd:author_bio>
										<pubDate>Mon, 20 Jan 2025 11:24:30 +0000</pubDate>
					<updated>Mon, 20 Jan 2025 15:33:31 +0000</updated>
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								<![CDATA[There's a risk of over-diagnosis]]>
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								<![CDATA[<p>Private health checks used to be the preserve of wealthy CEOs. But with NHS waiting lists stretching into years, Neko Health has stepped in for the masses. In a blaze of publicity, the Swedish company has set up a new clinic in Marylebone, offering tests billed as “a health check for your future self”. The clinic is Insta-friendly, offering minimalist chic and sleek photogenic gadgetry. All curved cream chairs, pastel walls and softly lit scanning rooms, it seems more like a spa than a medical center, and is certainly a far cry from your typical NHS hospital.</p>
<p>Cofounded by Hjalmar Nilsonne and Daniel Ek, one of the billionaire founders of Spotify, Neko now boasts various influencers posting reels of their health check, which cost £300 a pop. That hefty asking price comes with some big claims about what the firm can do: Neko claims their scans have led to “potentially life-saving” healthcare. Nor are they alone. Longevity has become an obsession for a range of tech titans. <a href="https://www.technologyreview.com/2023/03/08/1069523/sam-altman-investment-180-million-retro-biosciences-longevity-death/">Sam Altman</a> and Peter Thiel are just two examples here, even as other firms are springing up to imitate Neko’s model.</p>
<p>Fundamentally, these ideas are rooted in logical, predictable input-outcome systems which primes people to apply the same mechanistic thinking to the complexities of human biology. But the human body is more than a “complex computer”. Tech enthusiasts, driven by a relentless march of progress in processing power and engineering, can harbor a blind faith in cutting-edge medical technologies — an approach that can sometimes do more harm than good both to patients themselves and the NHS at large.</p>
<div class="ref-ar"><a href="https://unherd.com/2024/05/the-alzheimers-industry/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2024/05/the-alzheimers-industry/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2024/05/GettyImages-1241068594.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2024/05/the-alzheimers-industry/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">More from this author</span></a><a href="https://unherd.com/2024/05/the-alzheimers-industry/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>The Alzheimer&#039;s industry</h5></a><p class="author"><a href="https://unherd.com/2024/05/the-alzheimers-industry/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Margaret McCartney and Deborah Cohen</a></p></div></a></div>
<p>At the heart of Neko’s platform is a full body check, aimed at seemingly healthy people, using around 70 different sensors alongside a mix of proprietary and off-the-shelf technologies. Together, they non-invasively photograph every inch of a patient’s body. To quote Ek: “The visual metaphor early on was around the airport scanner.” On their website, Neko explains that they scanned just under 3,000 people in 2023, of whom 14.1% required medical treatment. At the same time, Neko say that 1% of their patients received potentially life-saving treatment for severe conditions like cardiovascular diseases, severe metabolic diseases, and skin cancer, and that “none of these individuals was aware of their condition prior to their visit”.</p>
<p>These results come with the caveat that this is “not a scientific study with a control group for comparison” — but they “would like to share our outcomes for transparency and knowledge sharing”. That’s arguably fair, especially given the NHS is in such trouble at the moment. With so many people simply struggling to get through to their GPs on the phone, Neko offers results in “under an hour” and is “accompanied by substantial in-person time with a doctor”.</p>
<p>Yet there are problems here. For one thing, there’s an inbuilt inaccuracy risk. Some people will inevitably have what’s known as a “false positive” result: they won’t actually have the disease they were tested for. This means at least two things. First, patents risk becoming stressed unnecessarily. Second, they risk being investigated for ailments that aren’t actually there.</p>
<p>Even so, the “earlier is better” political mantra is a boon to those companies jumping on the early detection bandwagon. A spokesperson for Neko told UnHerd that NHS leaders, together with Health Secretary Wes Streeting, have “emphasised the importance of preventive care using modern technology to improve healthcare outcomes”. But true preventative healthcare is stopping problems before they start — not finding them early. That involves the boring but sensible stuff: eating a varied, plant-heavy diet; not smoking; not drinking excessively; being a healthy weight and doing reasonable amounts of varied exercise.</p>
<p>At the same time, Neko told us that the NHS provides “the most basic options, available only to individuals of specific ages and at certain intervals”. They, on the other hand, claim a comprehensive service delivered at speed. But this is to misunderstand the early detection — or screening — programs that the NHS does offer. These breast, cervical, bowel, aortic and newborn health assessments have been tested to ensure they do, on balance, more good than harm. And it’s not just about the risk of false positives. It’s also whether the tests deliver information that’s useful, rather than simply being a data dump.</p>
<div class="ref-ar"><a href="https://unherd.com/2024/10/obesity-will-starve-the-nhs/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2024/10/obesity-will-starve-the-nhs/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2024/10/GettyImages-1407236036-1.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2024/10/obesity-will-starve-the-nhs/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">Suggested reading</span></a><a href="https://unherd.com/2024/10/obesity-will-starve-the-nhs/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Obesity will starve the NHS</h5></a><p class="author"><a href="https://unherd.com/2024/10/obesity-will-starve-the-nhs/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Dr Emma Jones</a></p></div></a></div>
<p>Investigate Neko’s offering and there are other worries too. That talk of sensors and non-invasive photographs is certainly reassuring — but the claims that the firm’s scans have led to “potentially life saving” healthcare are impossible to prove because they have no control group. While 1% of their patients received potentially life-saving treatment, we don’t know what would have happened without the screening, and whether any interventions really did help.</p>
<p>Dr Minna Johansson is a Swedish family doctor and head of the Global Center for Sustainable Healthcare. A few years ago, she was invited to meet Nilsonne and Neko’s head of research to discuss the company’s offerings. In the end, though, Dr Johansson was unimpressed. “There are recognized scientific methods for evaluation of screening — which they seem to be totally unaware of,” she tells UnHerd. “The data they are gathering is quite useless for evaluating the benefits and harms of their intervention.”</p>
<p>In any case, some Neko services are already available in the NHS. That includes cholesterol and blood pressure tests — even as some Neko offerings simply haven’t been shown to give health benefits. Among other things, the NHS doesn’t recommend blood count or ankle blood pressure tests for healthy people. This isn’t because the health service is tight with money: some patients were tested in randomized trials, yet the results showed no benefit. As Johansson adds, other tests have never been properly evaluated or tested, so there’s no good evidence to think they’ll save lives.</p>
<p>The upshot? That people who do go to Neko may be falsely reassured that certain behaviors — too much alcohol; too little exercise — aren’t adversely affecting them. As Johansson puts it: “Based on the best available evidence, I would say that it is more likely that this is a waste of money and time: and there is an obvious risk that the individuals buying this intervention will be harmed through overdiagnosis and overtreatment.”</p>
<p>Undeterred, Neko Health is seeking to expand their user base. To quote their website: “Build upon your data. Every year.” Given three quarters of their customers apparently book a <a href="https://www.nekohealth.com/se/en/neko-data-story-year-one">repeat</a> test, this approach does seem successful, even as Ek has claimed his scheme is ultimately philanthropic. “I would be super happy if this turned out to make me no money, but we actually solved real issues in the world for real people.”</p>
<p>Perhaps. But turning testing into a rolling investment is catnip to companies looking for long-term gain. Certainly, other firms are entering the fray beyond Neko Health. <a href="https://www.asa.org.uk/rulings/vir-health-ltd-a22-1153049-vir-health-ltd.html">Numan</a>, a digital health company, offers a “fear nothing blood test” with big billboard-style adverts. They claim it’s an “accurate, science-based snapshot” of what’s happening <a href="https://www.numan.com/subscribe/fear-nothing/fear-nothing-plus-test">inside</a> your body. Finger-prick home tests assess liver enzymes, vitamin D and thyroid function.</p>
<div class="su-pullquote su-pullquote-align-left">&#8220;turning testing into a rolling investment is catnip to companies looking for long-term gain.&#8221;</div>
<p>Last year, however, Numan was censored by the Advertising Standards Authority for promising that their test was “free if we don’t find anything”. But as the ASA stated: “At least 90% of people who had used the Fear Nothing Blood Test had a result for at least one biomarker outside of the ‘normal’ range. We considered that this was a very high proportion of people whose test result indicated that they likely had something medically wrong with them. There was no information in the ad to inform consumers that false positives could occur or that their test results could be inaccurate.”</p>
<p>&#8220;From a statistical perspective,” explains David Spiegelhalter, emeritus professor of statistics at Cambridge University, “it is essentially inevitable that an apparently ‘positive’ result will be found if enough tests are done, just by chance alone. Investigating such a &#8216;false discovery&#8217; can only lead to unnecessary anxiety and expense.&#8221; At the same time, ASA has also challenged Numan’s subscription model — claiming that people weren’t aware they were signing up to repeat tests.</p>
<p>As advocates of health screening always say, people have a right to obtain whatever information they wish about their own bodies. But companies selling these tests should tell the full story of their limitations. For not only do these firms fail to inform people adequately about what they’re signing up for, they also risk causing needless anxiety — and clog up the NHS when worried patients go to their doctors. This isn’t merely a hypothetical danger: one 2023 survey found that 90% of responding GPs <a href="https://www.pulsetoday.co.uk/analysis/screening/how-unofficial-screening-tests-are-impacting-gps/">had patients</a> who visited them to discuss the results of private screening tests. The NHS is essentially left to pick up the pieces once the private sector has profited, leaving those who really do have valid concerns at the back of a lengthening queue.</p>
<p>Obviously, Neko Health claims this isn’t their model. They say, rather, that their aim is to alleviate strain on the NHS, suggesting that patients will see a doctor during their visit to the clinic. The physician is there to explain results, answer questions and arrange any further tests “at no extra cost” to either the patient or the NHS But, tellingly, Neko will <a href="https://www.nekohealth.com/se/en/faq">then</a> “refer you back to your GP with our findings and recommendations”.</p>
<p>As the NHS grapples with immense pressures, the likes of Neko Health and Numan purportedly step in to fill the gap. The result? Longer waiting times, diminished resources, and a growing sense of inequity in healthcare access. It&#8217;s a troubling paradox: as our public health system falters, the private sector thrives, and we all bear the brunt of its consequences.</p>
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					<title>The Alzheimer&#8217;s industry</title>
					<link>https://unherd.com/2024/05/the-alzheimers-industry/?edition=us</link>
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										<unherd:main_theme>Healthcare</unherd:main_theme>
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						<![CDATA[Margaret McCartney and Deborah Cohen]]>
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							<![CDATA[Is Alzheimer’s becoming optional? Leah Nash for the Washington Post]]>
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							<![CDATA[<p><strong>Margaret McCartney </strong>is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.</p>
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															<unherd:author_bio>
						<![CDATA[is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.]]>
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										<pubDate>Wed, 01 May 2024 23:03:40 +0000</pubDate>
					<updated>Thu, 02 May 2024 06:11:50 +0000</updated>
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		<category><![CDATA[Alzheimer’s]]></category>
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															<unherd:app_notification_title>The Alzheimer&#8217;s industry</unherd:app_notification_title>
					<unherd:app_notification>Sufferers are paying over the odds — but do the treatments work? By Margaret McCartney and Deborah Cohen. Tap to read.</unherd:app_notification>
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								<![CDATA[Sufferers are paying over the odds — but do the treatments work?]]>
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								<![CDATA[<p>In a leafy London suburb, there’s a smart little clinic that promises miracles. Run by Dr Andrew Greenland, an NHS consultant in emergency medicine, the Greenland Centre claims to be able to do something that the drug industry has failed to, despite spending billions on research over several decades: &#8220;Reverse the cognitive decline of early Alzheimer’s disease.&#8221;</p>
<p>The centre runs a protocol which claims patients can expect to see results within six months. And, according to its website, “to maintain improvements and prevent further cognitive decline, participants should consider the program as a long-term prospect”. This miracle treatment — the Bredesen Protocol — doesn’t come cheap. Patients are charged almost £3,000 for their first three appointments with any additional consultations costing another £475.</p>
<p>But with questions hanging over the effectiveness and harms of the two new Alzheimer’s wonder drugs, lecanemab and donanemab, expected to arrive on the market soon, any treatment that claims to reverse cognitive decline would be worth paying over the odds for. And right now, people are queuing up to pay. There are 21 practitioners and centres across the UK offering the Bredesen Protocol — or treatment plans based on his approach — charging anywhere up to £6,000 for consultations. Two say they are at “capacity”: suffering patients and their families are desperate to find something that might help their loved ones.</p>
<p>Desperation feeds exploitation and the Bredesen Protocol has been described by some scientists as quackery. The Alzheimer’s Society UK told us the regime was “not supported by scientific evidence”, while in Canada it is described as “offering ‘false hope”; and across various medical journals, academics suggest its use and promotion is ethically questionable.</p>
<p>Dr Dale Bredesen, however, claims that Alzheimer’s is “literally becoming optional”. A professor of molecular and medical pharmacology at UCLA, he has identified the 36 multifactorial “contributors” to the disease, and targets them “with a precision medicine type of approach”. This involves regular brain-training exercises, stress reduction plans and a ketogenic diet.</p>
<p>Deborah was diagnosed with Mild Cognitive Impairment aged 49 and told she was likely to develop Alzheimer’s. She had been having difficulty recognising people’s faces and switching words for a few years. After her sister-in-law discovered Dr Bredesen’s protocol, she signed up and was prescribed a plant-based diet, with virtually no red meat and plenty of intense exercise which she does on her Peloton bike. “All of a sudden, my brain started to work clearly. It was like the light went back on,” she says.</p>
<p>But mild cognitive impairment — MCI — is not the same as dementia. It refers to memory glitches which may be noticeable but don’t affect the person’s ability to function. Alzheimer&#8217;s Research UK says that about one in 10 people who have been diagnosed with mild cognitive impairment develop dementia each year. However, they also say that five in 10 will either stay the same or get better, with their memory returning to normal. Memory problems can be triggered by all manner of things: depression and anxiety, vitamin deficiencies, thyroid disorders — even some types of medication and being generally unwell, for example with a chest infection. Nonetheless, stories such as Deborah’s have been used as the basis of the evidence that the Bredesen Protocol works.</p>
<div class="ref-ar"><a href="https://unherd.com/2026/11/why-iran-contra-still-matters/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2026/11/why-iran-contra-still-matters/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2026/11/Oliver-North.jpeg?w=300" /></a><div class="content"><a href="https://unherd.com/2026/11/why-iran-contra-still-matters/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">More from this author</span></a><a href="https://unherd.com/2026/11/why-iran-contra-still-matters/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Why Iran-Contra still matters</h5></a><p class="author"><a href="https://unherd.com/2026/11/why-iran-contra-still-matters/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Deborah Cohen</a></p></div></a></div>
<p>Another is Bredesen’s “Patient Zero”. She was so depressed about her symptoms and prognosis that she had been saving up prescription pills to end her life. “I was so desperate at that point,” she says, “that I just wanted to check out.” She contacted Bredesen anonymously because she was afraid of losing her security clearance in her job. And after three months on the protocol, she noticed a transformative change. “I was just running around the house saying ‘I got my brain back I got my brain back.’ I was just so overjoyed,” she says. Convinced this proved the protocol worked, Bredesen reported her as a case study in a paper published in 2014.</p>
<p>When we wrote to Dr Bredesen saying his protocol had been described as “quackery”, he sent us this case report along with other research papers that he claimed provided the evidence for his treatment plan. He highlighted his medical qualifications obtained from some of the most prestigious establishments, that he’d worked in famous Nobel Prize-winning labs and had more than 230 peer-reviewed publications. “Few clinicians, and no reporters, understand the fundamental science that underpins what we are doing,” he says. “I doubt if any has read all of our publications.”</p>
<p>But according to Rob Howard, professor of Old Age Psychiatry at UCL, Bresenden&#8217;s claims are largely based on poor science that no reasonable practitioner would consider indicates efficacy. “He doesn&#8217;t really have any data that&#8217;s worth debating with him,” he says.</p>
<p>Indeed, the research that Dr Bredesen produced for us highlights problems with the way this sort of material is published and disseminated. He sent links to three studies, which he had previously referred to as “anecdotal reports” — the least reliable form of evidence. Another paper referred to the “trial” that clinics point to when they claim: “84% of the patients showed improvement.” But in fact the paper, published in the <em>Journal of Alzheimer’s Disease</em>, does not prove the protocol works. The 25 patients studied had a mixture of “dementia or mild cognitive impairment”, and given that many patients with MCI improve by themselves, we would expect to see improvements over time, regardless of treatment.</p>
<div class="su-pullquote su-pullquote-align-left">&#8220;He doesn&#8217;t really have any data that&#8217;s worth debating with him.&#8221;</div>
<p>In any case, because the protocol uses multiple interventions, even if we did see genuine improvements, we would not know whether it was the simple advice that “worked” (prioritise sleep; eat a plant-rich diet; exercise for 45 minutes six days a week) — or if it was the complex regime of herbal supplements, “brain training”, “gut healing nutrients and digestive enzyme support” along with, for some patients, naltrexone (a drug used to treat opioid addiction and alcohol dependance). Bredesen’s conclusion that “it is possible to reverse cognitive decline in MCI and early dementia with a personalised, precision medicine” is astonishing, given that the nature of their study design meant they could prove no such thing.</p>
<p>Meanwhile, Bredesen has put these 230 peer-reviewed studies on his CV and <a href="https://www.apollohealthco.com/bredesen-protocol/" target="_blank" rel="noopener">is using them as proof</a> that his method works, pushing out lucrative clinics across the country. The trouble is, just as not all studies are created equal, nor are medical journals. There’s a dark underbelly in medical publishing which Bredesen has chosen to exploit, publishing in a section of the medical press that might be best described as “predatory journals”. These journals are best thought of as financial scams, says Dr Richard Smith, former editor of the <em>BMJ</em> and author of the book, <em>The Trouble with Medical Journals</em>. The publishers will publish your study for a fee; there is no peer reviewing or editing involved.</p>
<p>In other words, unwary doctors, journalists, patients and families can easily be misled into thinking a published paper in a medical journal is a sign of quality when it may simply be a sign that the author has paid to be published.</p>
<p>“When predatory journals first appeared more than a decade ago, it was widely assumed that authors published in them because they had been deceived,” says Smith. “But it’s become apparent that many authors chose to publish in them because they know that the paper will be published. The authors can put the papers on their CVs, and appointments committees or grant-giving bodies will not know that the reference is to a predatory journal,” he explains.</p>
<p>This isn’t the only place where the medical establishment has opened a rich seam for people such as Bredesen to exploit. Those complicated financial relationships between dementia charities and the drug companies manufacturing the new treatments have proved useful for Bredesen. He has called out the Alzheimer’s Association for praising the medical treatment aducanumab, after it received a significant amount of money from the drug’s manufacturer, Biogen. As Bredesen phrased it: “Well yeah, they were paid over a million dollars. No kidding they thought it was a good drug. It’s been surprising how incredibly powerful the infrastructure of money making is.”</p>
<div class="ref-ar"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2023/06/GettyImages-1233063778-1-e1687880089499.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">Suggested reading</span></a><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Is liberal society making us ill?</h5></a><p class="author"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Gurwinder Bhogal</a></p></div></a></div>
<p>So, how do patients and families work out who is offering treatment that might be worth the money — especially when clinics are run by bona fide, GMC-registered doctors? As we have seen, medical journals aren’t all sound — just because something has been published doesn’t necessarily mean we should take it at face value — and it also seems that those who are supposed to uphold the integrity of medicine might not necessarily be protecting patients either.</p>
<p>We told the Advertising Standards Authority (ASA) about the claims Greenland Medical Centre were making in November 2023, who agreed they should be changed and they referred our complaint to the compliance team. However, six months later, Greenland Medical’s website still says they can “reverse the cognitive decline of early Alzheimer’s disease”.</p>
<p>We also raised our concerns with the General Medical Council, the doctors’ regulator, that false claims were being made to a potentially vulnerable group of patients by a registered doctor. The Council refused to investigate, saying “no information has been provided to show that the treatments offered by the doctor are a danger to patients” or that “patient safety is at risk”. They also said that “It does not seem like the information provided that there is clear indication Dr Greenland has been deliberately dishonest about the treatments and what it offers to patients.”</p>
<p>Instead, the GMC told us to raise concerns with the Care Quality Commission, which we did, in November 2023: they have yet to respond.</p>
<p>Dr Greenland told us: “We are prepared to engage with the Advertising Standards Association to ensure that our communications are in compliance and accurately represent the scientific evidence supporting the protocol.” They also stated that “the Bredesen Protocol represents a novel and evidence-based approach to Alzheimer&#8217;s treatment”.</p>
<p>There are people in public health medicine who are providing credible, useful work. Professor Carol Brayne, for example, says that we should have a more holistic approach to looking at Alzheimer’s rather than focus on individual theories. “What the clinics are doing is trying to package all interesting hypotheses that are out there,” she says, “as well as sensible stuff that&#8217;s been around for centuries and put them all together as a magical prevention package. There is some reasonable stuff mixed up with speculative stuff.”</p>
<p>But the truth is that there is no magic cure, and we should be honest about this and the ongoing need for high quality research. Considering the potential to exploit people, the lack of effective regulation around highly priced but ineffective interventions for people with cognitive issues is deeply troubling. Caring for patients with dementia should also mean protecting them from false, expensive hope. Our regulators need to proactively step up.</p>
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					<title>Has HRT propaganda misled women?</title>
					<link>https://unherd.com/2024/03/has-hrt-propaganda-misled-women/?edition=us</link>
											<comments>https://unherd.com/2024/03/has-hrt-propaganda-misled-women/?edition=us#comments</comments>
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										<unherd:main_theme>Menopause</unherd:main_theme>
					<dc:creator>
						<![CDATA[Margaret McCartney and Deborah Cohen]]>
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																<unherd:article_ranking>2</unherd:article_ranking>
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							<![CDATA[Gwyneth Paltrow has opened up about menopause. Rachel Murray/Getty Images)]]>
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							<![CDATA[<p><strong>Margaret McCartney </strong>is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.</p>
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															<unherd:author_bio>
						<![CDATA[is a GP and broadcaster.<strong> Deborah Cohen</strong> is an award-winning, medically qualified TV, print and radio reporter.]]>
					</unherd:author_bio>
										<pubDate>Thu, 07 Mar 2024 00:02:29 +0000</pubDate>
					<updated>Thu, 07 Mar 2024 09:55:45 +0000</updated>
							<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[HRT]]></category>
		<category><![CDATA[menopause]]></category>
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								<![CDATA[Menopause is not a disease]]>
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								<![CDATA[<p>The menopause is having a moment. Once only spoken of rarely, and with embarrassment, it is now sensationalised in the media. This has been accompanied by a massive increase in prescriptions for Hormone Replacement Therapy, which have more than doubled in England in the past 5 years. But is this hormone revolution really helping women?</p>
<p>It is true that misogyny prevails in the medical profession and that women’s healthcare is often overlooked and under-researched: just look at the current attitude towards endometriosis and the crisis in childbirth and after-care. But there is a greater philosophical question here that needs to be interrogated: Is menopause a disease of oestrogen and ageing that should be treated? Or are we instead pathologising and medicalising a normal part of the female life cycle?</p>
<p>This week, <em>The Lancet</em> medical journal published a series of articles examining the current media narrative, saying it’s “time for a balanced conversation about menopause”. Its editorial states that, while some women experience severe symptoms, others have mild or no symptoms. And despite the frequent claims that menopause is associated with poor mental health, it states that “there is no strong evidence that the risk of first-onset clinical depression is increased over the menopause” — although some women with previous mental illness may be at risk.</p>
<p>Menopause wasn’t always taken so seriously. There was a time when women were expected to shut up and put up with their hot flushes. We darkly referred to this stage of life as “the Change”. But then, the bestselling book <em>Feminine Forever</em>, by gynaecologist Dr Robert Wilson, changed that narrative forever. He made the case that menopause was a serious disease and that post-menopausal women were deficient: “a woman’s physical, social, and psychological fulfilment all depend on one critical test: her ability to attract a suitable mate and to hold his interest for many years.” He described menopause as “a mutilation of the whole body” and HRT was a way to “be restored along with a fully feminine appearance”.</p>
<p>Though some feminists fought back, many health activists embraced the view that, like contraception, HRT was a key to women&#8217;s liberation. But what wasn’t common knowledge at the time was that Wilson was funded by the HRT industry.</p>
<div class="ref-ar"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2023/10/2023-10-10-unherd-zoe-patch-pub.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">More from these authors</span></a><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>We need to talk about ZOE</h5></a><p class="author"><a href="https://unherd.com/2023/10/we-need-to-talk-about-zoe/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Deborah Cohen and Margaret McCartney </a></p></div></a></div>
<p>There followed an inevitable surge in demand for HRT until, in the early 2000s, a large study from the Women’s Health Initiative reported an increased risk of breast cancer associated with long-term HRT use. Overnight, the treatment fell out of fashion. That study has now been contested, and in the past decade, the medication has had a renaissance. Parliamentarians are calling for menopause health checks, and leave from work, and social media is full of doctors recommending it to women — and women recommending it to each other — not just as a way to reduce hot flushes, but as a way to save marriages, skin tone, and sex lives — as well as reducing future cardiac and dementia risks.</p>
<p>But do all these claims stack up? The National Institute for Health and Care Excellence is the official provider of evidence-based guidelines for UK doctors. In 2015, they published their “first guideline on menopause to stop women suffering in silence”. One of the guideline developers said: “For the past decade, some GPs have been worried about prescribing HRT, and women worried about taking it. I hope that this new NICE guideline will empower women to talk to their GP or practice nurse about menopause and provide them with information on the range of options that could help. For health professionals, the guideline should boost their confidence in prescribing HRT.”</p>
<p>In other words, women should be asking for HRT, and GPs should be prescribing more of it. And certainly, there is good-quality evidence that HRT is highly effective at reducing the hot flushes and sweats that many women experience. But it also comes with side effects — in particular, the risk of certain cancers and, where oestrogen is taken as tablets, an increased risk of blood clots.</p>
<p>Annice Mukherjee, a consultant endocrinologist with a specialist interest in the menopause, says: “Women who want to access HRT should be able to get it on the NHS. But I think it&#8217;s just gone from one extreme to another… What we need is balance. Some women will benefit from some treatments but not others. Some women will come to harm from some treatments and not others. Treatments like HRT are being oversold for that potential benefit.”</p>
<p>One area of controversy is whether HRT has preventative properties. NICE says that HRT can be used to treat vasomotor symptoms — flushes, sweats and “low mood that arises as a result of the menopause”. It is also listed as effective for the treatment of osteoporosis, though other drugs are preferred. The Medicines and Healthcare products Regulatory Agency (MHRA) advises that HRT should only be prescribed to relieve post-menopausal symptoms that are adversely affecting quality of life — for example, poor sleep caused by night sweats, in turn causing fatigue or low mood — and say that “treatment should be reviewed regularly to ensure the minimum effective dose is used for the shortest duration”.</p>
<div class="ref-ar"><a href="https://unherd.com/2024/03/irelands-referendum-is-an-attack-on-women/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2024/03/irelands-referendum-is-an-attack-on-women/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2024/03/GettyImages-962727780-1-1-e1709554465931.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2024/03/irelands-referendum-is-an-attack-on-women/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">Suggested reading</span></a><a href="https://unherd.com/2024/03/irelands-referendum-is-an-attack-on-women/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Ireland&#039;s referendum is an attack on women</h5></a><p class="author"><a href="https://unherd.com/2024/03/irelands-referendum-is-an-attack-on-women/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Paul Kingsnorth</a></p></div></a></div>
<p>It’s important, though, not to confuse correlation with causation. Treating flushes with HRT to improve sleep is often helpful. But given the exterior factors often affecting women at this stage in their lives — looking after younger or older family members, as well as the impact of the gender pay gap —  the menopause might not be the sole trigger for their mood swings. And if HRT fails to remedy these problems, patients can end up on escalating doses rather than being encouraged to explore whether another factor might be the problem.</p>
<p>Indeed, anxiety, weight gain, fatigue, and low mood are rising across society because of poor physical mobility in midlife. But because of the health propaganda campaign, women attribute it to the menopause, says Mukherjee. “This may be contributing, but they go on HRT and this doesn’t help.&#8221;</p>
<p>“It’ll treat flushes, but they weren&#8217;t a problem anyway,” she continues. “And then they’ll say that they have heavy bleeding or weight gain or bloating, or migraines are getting worse. Some doctors will then just escalate the doses up, and up, and up. And then, if it&#8217;s not working, they are put on testosterone.” She adds: “The evidence for testosterone for those general symptoms is zero. Again, that&#8217;s all propaganda.”</p>
<p>Growing awareness is exacerbating the problem, piling pressure on doctors to prescribe. As a result of powerful activism, access to HRT is sometimes seen as a “rights” issue for women.</p>
<p>Brooke Nickel is a public health researcher at the University of Sydney, whose work has looked at the language used to sell HRT products to women. “They’re really spinning that feminist narrative around,” she says. “If you don&#8217;t do something, you&#8217;re not taking control of your body or you&#8217;re being oppressed by other people.”</p>
<p>“They then either conceal or downplay the evidence,” she continues. “They don&#8217;t talk about harms, they only talk about benefits, they only spin it in a positive way. So it&#8217;s not really giving transparency or giving all the information to women.”</p>
<p>Mukherjee agrees. “People are using HRT as a panacea and it&#8217;s not a panacea. They think it&#8217;s going to prevent heart disease, dementia, diabetes, etc. Some doctors say, if it doesn&#8217;t make its symptoms better, it doesn&#8217;t matter. It&#8217;s going to prevent disease.” The trouble is, we simply don&#8217;t know which of those women is going to develop complications. “We know from previous research there might be one in 50 women who get a breast cancer diagnosis with five years of treatments,” Mukherjee says.</p>
<div class="ref-ar"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><img decoding="async" src="https://unherd.com/wp-content/uploads/2023/06/GettyImages-1233063778-1-e1687880089499.jpg?w=300" /></a><div class="content"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span class="meta">Suggested reading</span></a><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><h5>Is liberal society making us ill?</h5></a><p class="author"><a href="https://unherd.com/2023/06/is-liberal-society-making-us-ill/?edition=us&#038;ref=refinnar" class="text-decoration-none border-0"><span>By</span> Gurwinder Bhogal</a></p></div></a></div>
<p>Social media is complicating the landscape even further. Dr Liz O’Riordan, a former breast surgeon who has been treated for breast cancer herself, says: “Lots of members of the public are getting their information from celebrity influencers.” Some make an effort to be accurate, she says, but not all. There are also some high-profile doctors claiming menopause is a disease that must be treated, and that if you don’t take HRT you will get heart disease and dementia.</p>
<p>This is confusing for women in the breast cancer community, as many can’t take HRT due to the risk of their cancer worsening or returning. Nor does O’Riordan think that the risks of HRT — which include breast cancer and for some preparations blood clots — are fairly explained online. Notably, however, NICE’s draft guidance explicitly does not recommend that HRT is used to prevent cardiovascular disease or dementia.</p>
<p>Normally, if a treatment is not working, we reconsider whether the diagnosis is correct. But in this case, it’s different. “It’s a bit like Tripadvisor — we are not getting a balanced view,&#8221; says O&#8217;Riordan. “A lot of women don’t need HRT, instead we only hear the worst stories about menopause and as a result women are scared, asking, &#8216;if we don’t take it what’s going to happen to us?&#8217; There is a real fear for the future.”</p>
<p>Consider what happened after NICE’s updated draft guidance for managing menopause was published recently. There was an outcry on social media about one particular recommendation: cognitive behavioural therapy, which NICE said can “reduce the frequency and severity of hot flushes and night sweats and should be considered alongside or as an alternative to HRT”. One post in response read: “Talking therapy for menopause is insulting, cruel and pointless.”</p>
<p>Myra Hunter would disagree. The emeritus professor has been researching menopause for most of her professional life, and argues that CBT can make a real difference to women who are experiencing hot flushes and sweats. She’s not against HRT, but thinks that menopause can best be understood through a “biopsychosocial” framework that considers biology, psychology and social factors.</p>
<div class="su-pullquote su-pullquote-align-left">“They don’t talk about harms, they only talk about benefits, they only spin it in a positive way.&#8221; </div>
<p>“Our minds and bodies are intrinsically linked,” she says. “CBT has been used to help people to manage physical symptoms, such as chronic pain, for some time… We should not say that CBT is a cure-all — it’s not. It’s a choice for women. It may not get rid of symptoms entirely, but it might reduce the negative impact they have on her life.”</p>
<p>In fact, the NICE draft guidance says that CBT should only be “considered” for help with flushes — and still primarily recommends HRT. No-one is saying that menopausal symptoms are all psychological. Hunter also observes that the meaning and experience of menopause varies across cultures. “In some countries, such as Japan or India, women tend to report fewer [hot flushes]; and there may be other factors which explain these differences, such as diet and nutrition.”</p>
<p>Hunter has also noticed a resurgence of the Sixties idea that HRT can make you look younger, sexier, and less wrinkled. “I’ve been struck by women asking about testosterone, even when they are doing well, thinking it may help give them ‘energy’ or make them feel more ‘lively’.” HRT marketing has created a demand that wouldn’t otherwise exist.</p>
<p>Perhaps we should be grateful for this blossoming interest in women’s health. But this wave of concern comes with strings attached. It’s not helping women to insist that we all “need” HRT, or to promote it to treat conditions where there simply isn’t evidence for it working. We need independent information — not to be oversold products like consumers in a marketplace. By treating post-menopausal women as “deficient” in hormones, rather than going through a normal stage in life, women are being medicalised. And is that really doing them a favour?</p>
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