Freddie’s Story

This story is a little out of date now, as I wrote it for my fundraising page when I started the challenge. I aim to update it soon. Sadly, Freddie's condition has not changed.

Freddie and I met at university in 2016. Since 2022, Freddie has had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This cruel condition has seen Freddie deteriorate from a healthy 24-year-old to completely bed-bound. He has had to quit his job, move home, and minimise his exposure to all stimuli. In early 2024 he even had to spend seven weeks in hospital. Before Freddie went into hospital, knowing that a crash was coming, he created a list of yes or no questions for his parents to ask him (for example: “are you thirsty?”, “are you too hot?”), so that he could respond just by blinking.

Now back at home, where he is cared for by his incredible family and a team of nurses, he continues to have very severe ME/CFS. He can handle only minimal stimulation, of any kind. Speaking, seeing, hearing, and being touched are tiring exertions for him that can be painful. He lies in a dark room, wearing an eye mask and headphones to minimise his exposure to light and sound. He’s barely able to speak.

I saw Freddie in January 2024, shortly before he went into hospital. It was just before I moved to Sydney and he said that if I wasn’t moving away he wouldn’t have seen me because it was taxing for him. In the six hours I was at his house, we had four three-minute conversations. Since February 2024, I have not had any communication whatsoever with my best friend.

I visited Freddie’s family when I was back in the UK in June 2024. Freddie wasn’t aware that I was there. I was able to stand in his room and look at him. I had to be silent. Seeing him lying motionless in his dark room with his headphones and eye mask on, and thinking about what he was going through, and how long he had been suffering, was deeply emotional.

ME/CFS is an often misunderstood, or simply unknown, condition, despite it afflicting an estimated 500,000 people in Australia and at least 250,000 people in the UK (widely believed to be a serious under-estimate). I knew nothing about ME/CFS before it affected Freddie. The general perception, I think, is that ‘chronic fatigue’ means being tired all the time. That is what I thought it meant. I am still far from an expert but, as Freddie’s condition has continued and deteriorated, I have learned how devastating ME/CFS is. It is so much more, so much worse, than being tired all the time. In fact, he doesn’t sleep much at all. I remember Freddie saying that he had had a migraine for months. That hasn’t changed as far as I am aware, so by now it must have been years. Touch is painful. Sound and light are tiring. Freddie is only able to have very brief, whispered conversations with his parents. That is it.

What Freddie is suffering is tragic and horrendous. It is unimaginable what his family, who continue to be utterly amazing, are going through. For those of us close to Freddie, it has been extremely difficult. The sadness and sense of loss is profound.

Inspired by Freddie and his family, I would like to do what I can to raise awareness for ME/CFS. I am going to run eight marathons: one in each Australian state and territory. I will be raising funds for the ME Association (in the UK) and ME/CFS Australia. The charities have kindly been putting in a great deal of work to support me, for which I am very grateful.

If anyone would be so kind as to donate, I would be extremely grateful. Your money will go towards helping the shockingly huge numbers of people suffering with ME/CFS.

If you’ve read all of this, thank you so much. I appreciate it enormously. Just by reading you are helping to raise awareness. Thank you.

Freddie, I miss you.