This framing assumes over prioritising safety has no downside. It means telling a stage 4 cancer patient they can’t take a drug that passed a phase 3 trial, and must die of their cancer instead, while experts debate how it works. It’s their body and their choice. For that patient the choice isn’t wait safely vs take a risky drug. It’s die waiting vs a chance of living. That’s why patients already inject untested compounds at unregulated clinics in Mexico. Millions die while we wait and nobody gets blamed. If 100 people died from an AI designed drug it would be called a catastrophe, even though most of them would have been dead within months anyway. Patients know new drugs can go wrong. The alternative is extreme suffering or death. We aren’t impatient because we want the next shiny update, we’re impatient because many of us will die before it arrives. Drug regulation is already too strict. With AI now moving biology this fast, the priority should be loosening it, not tightening it. Right now a patient who will die from their disease in a few months, or take their own life because of the suffering, usually can’t get access to promising drugs still in trials or try combinations that might work better together but carry more side effect risk. They just have to die. If we were being logical, those patients could enroll in a program, try the drug or any combination they want, and record the outcome so it feeds back into the science. Relying on slow, admin heavy trials with tightly selected groups as the only way to learn about new treatments is the least efficient and least ethical option we have. It exists to protect pharma and regulators from blame, not to reduce suffering and death. Now that some people could realistically be cured in the next decade instead of waiting 20 years for trial funding and long term outcome studies, we should be moving away from it fast. For weight loss or baldness, be as rigorous as you like. Framing this around stage 4 cancer is detached from what patients actually face. The people debating it don’t pay for the delay, the patient does.

A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident. In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on. In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME. The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021. In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017. Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research. Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients. All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.