DecodeME: A New Research Project For ME/CFS

Back at the beginning of the year, I started writing about my diagnosis of Chronic Fatigue Syndrome (CFS, also known as Myalgic Encephalomyelitis or ME), after struggling with fatigue and other symptoms for over a decade, and the various ways I’ve been attempting to manage it or even treat it. That is still a blog post that I want to write and post but with the pandemic and lockdown, that treatment process has stalled, which has obviously left the post hanging. So I’m going to wait for that treatment to continue to a natural stopping point (it’s likely to end up a series, given how little is known about ME/CFS and how difficult it is to treat) before I round off that post.

BUT something has happened fairly recently and I felt that, regardless of my own story and my own progress, it was too important not to post.

In June 2020, the Medical Research Council and National Institute for Health Research awarded £3.2m to a new ME/CFS study called DecodeME, the largest ever study into the condition. Work will begin, all being well, in September 2020 where DecodeME will look at samples from 20,000 people with ME/CFS, with the intention of discovering the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition. The hope is that this information will further the development of diagnostic tests and targeted treatments for the condition. You can still apply to be a volunteer here (although you will not be held to that application when the study officially begins) and there’s more information here, on Action For ME’s website.

This is huge news as there is so little knowledge around ME/CFS. The world over, people with the condition have been at best ignored and at worst left to die. My experience is extremely common: I was half-heartedly diagnosed and then abandoned by my doctor. It was never mentioned again and I was left to manage it with only the help of my family. I was reluctant to pursue the CFS diagnosis more aggressively because I’d been told that there was nothing anyone could do to help me. I wanted it to be something else. But eventually I was done with the waiting and the lack of engagement from the medical community. I told my doctor to put CFS on my file as the official diagnosis and have been following various routes of treatment ever since. As I said, I want to talk more about this but I think it’s best left to be its own post.

But this study gives me real hope and I’m so excited to be part of it, part of something that could change not just my life but the lives of so many people. It’s unacceptable that the medical community have abandoned such a large group of people and moments like this feel like new beginnings. I’m excited and inspired and determined. And if nothing comes from it, then I’ll move on. I’ll find something else to try. I’m not giving up. To simply accept that this is my life is not an option.

Screenshot 2020-07-31 at 16.14.10

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