“Granny, I got the job!”

These are the words I yelled as I hurtled as fast as my pain-riddled body would allow, from my home office to the lounge, parodying the recent inescapable advert for a job-searching website. I had applied for my second promotion in 18 months fully expecting not to even make it as far as a job interview, let alone get the job. I was therefore understandably elated to learn that I would be moving up to the role of Data Manager, moving across to cancer research in doing so.

Being a data manager is a significant step up from my current work as a trial coordinator, taking on new responsibilities in managing both projects and people (please spare a thought for the poor individuals who have been picked for me to line manage for the first time ever). My focus will remain on obtaining complete and accurate data sets, ensuring the safety of patients both in a medical and data security sense, but I will now start to have a greater influence over how the clinical trials I work on are run, something I’ve wanted to achieve since joining the field four years ago. Admittedly, I never expected to end up as a data manager so soon, but perhaps my very personal reason for wanting to influence clinical trials has acted as a driving force throughout my career so far.

Like many M.E patients who were sick prior to the pandemic, I understand just how much a single clinical trial can influence the lives of patients. A single clinical trial has shaped the course of my life for almost half of it. Unfortunately, in my case it was not a profound medical breakthrough that improved my life drastically, but a travesty of bad science and prejudice that put me in a wheelchair.

A little over ten years ago, the PACE trial assessed the efficacy of Graded Exercise Therapy (GET) in improving the physical activity levels that could be tolerated by M.E patients. The trial was overseen by psychiatrists who still believe that M.E is purely psychosomatic despite evidence to the contrary, their bias clouding their conclusions. Worse still, the exercise undertaken by each participant was not accurately recorded, which would be like testing a drug without monitoring the dose. Despite the shoddy work, the PACE trial was the primary influence for the NICE guidelines that claimed GET was the cure for M.E, cementing the belief in medical communities that M.E was simply patients believing themselves into being tired, a belief that is still commonly held today.

Like many M.E patients I was subjected to GET per the NICE guidelines, and like most M.E patients subjected to GET my health deteriorated catastrophically. It is because of GET that I must use a wheelchair to leave the house, and that I am on a plethora of medications to manage symptoms. It almost derailed my education, and my social life suffered greatly. While I have managed to recover some semblance of normality in the years since, the course of my life was irreversibly changed by GET.

It took over a decade of constant fighting to get NICE to reconsider subjecting M.E patients to GET, but even though the guidelines have been changed, many medical professionals still push people with M.E to undertake exercise therapies that are GET in all but name, and the stigma around M.E will take decades to dismantle. Furthermore, long-COVID patients (who are fairly arbitrarily separated from M.E patients because their illness was a result of coronavirus, and not another virus like flu, glandular fever or meningitis) are also being subjected to exercise therapies and having similar reactions.

This experience has ensured that I understand perhaps more than anyone else in my department just how important clinical trials are. They can save lives, and they can destroy them. They can shape public perception and medical stigma for decades, perhaps even centuries. I certainly won’t be able to stop this happening on clinical trials I’m not involved with, and I also have to recognise that my influence over the handful I do work on will be limited, but I will do my damnedest to be one extra barrier to that sort of shoddy work having such a significant impact on so many lives. I can but try.

As a result of my emotional investment, I am equal parts terrified and excited to start my new role. There’s a lot for me to learn, and the person I will be replacing is by all accounts brilliant at their job. I have big shoes to fill. Furthermore, there aren’t many people with visible disabilities in roles of authority, and while I’m sure the people I work closely with will be accepting, not everyone would be happy to follow the lead of a wheelchair user. That said, I am sure that the source of my motivation will get me through even the biggest of challenges that lie ahead.