Falling at the Final Hurdle.

A red heart and ECG heartbeat on a black and white background showing a stethoscope and medical documentation.

Earlier in the month I wrote about the National Institute for Health and Care Excellence’s review of M.E treatment guidelines, followed a few days later by a brief post reporting that the expert review of scientific evidence had concluded that Graded Exercise Therapy and Cognitive Behavioural Therapy were at best ineffective, and at worst, harmful. Mere minutes after hitting publish I ended up amending the post, as the news broke that NICE would put the publication of their review on hold, following the backlash of disgruntled medics who cling to outdated belief that M.E is psychosomatic laziness. Today, over two weeks later, NICE have decided to give in and will continue to advise the use of GET and CBT to treat M.E despite all the scientific evidence advising against this. There are no words to describe my anger at this travesty, but I will at least try to set down on paper (or in this case, screen) why I am so angry.

In 2011, the same year in which I contracted meningitis and then M.E and underwent GET, the PACE trial published their results. The study concluded that GET and CBT were moderately beneficial to M.E patients, and the medical community extrapolated “beneficial” to mean “cure”. Unfortunately, the PACE trial was dodgier than an alleyway besides a theatre in Gotham. The recruitment criteria were extremely broad and included a lot of people who in all likelihood did not have M.E at all. Most of the outcomes were subjective rather than objective, meaning they couldn’t be measured, which constitutes poor evidence scientifically speaking. One objective measure that absolutely should have been taken was exercise level, but this was not monitored despite exercise therapy being a trialled treatment – for context, this would be like trialling a new chemotherapy but not recording the dosage given to patients. Most damning of all was that the PACE trial was run by psychologists, who had no business whatsoever trialling physical therapies; of course a disease will be deemed psychological when no research is done from a physiological perspective.

Scientific experts have been pulling the PACE trial to shreds ever since it’s publication in 2011, but it took until 2021 for their analysis to be taken seriously. In the meantime patients like myself were being harmed by GET, but in the UK there is no formal way to report the adverse effects of a therapy unless a pharmaceutical is involved, meaning that our plight could not be reported. It took almost a decade of case studies accumulating to be taken seriously, and while any good scientist knows that case studies are the weakest form of evidence, with no other option to collect this data from patients, it is the only evidence available to us.

Scientific experts spent hours scrutinising all the evidence, including clinical trials akin to those I work on, and it is the analysis of these trials that is supposed to determine what treatments are offered on the NHS. Each trial takes a huge team of dedicated individuals, and thousands of hours of man-power, to produce the paper published in journals. It takes many experts to scour the journals for papers relevant to their review, extracting and standardising the data before conducting a complex statistical analysis to produce a literature review. It takes an abundance of literature reviews for a committee to be assembled to assess them. All NICE have to do is follow the advice of the experts. It is a slap in the face both as an M.E patient and as clinical trial coordinator for NICE to decide to ignore the expert committee, and that is why I am so angry.

What this whole saga irrefutably proves is that some medics would rather continue doing what they’ve always done despite knowing it harms patients, because to change their practices would be to admit that they are wrong. They would rather save face than save patients.

So the next time someone says that they struggle to trust doctors, you now know why.

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