[janet gunter]

We lost Ondine Sherwood this week, co-founder of Long Covid SOS, but more importantly the captain of our lifeboat. The logo of our patient-led campaign group is a life preserver. But to most of us, it felt like Ondine was on the lifeboat throwing them to us.

It's been five years since many of us first got sick. And today is Long Covid Awareness Day.

Five years ago few of us were aware of post-viral conditions. Some of us had really traumatic acute infections, some of us didn't even fit the official symptom list and concluded on our own we had Covid. But all of us started feeling a real sense of disquiet and growing panic as our symptoms came back over and over again, or persisted after the initial two weeks.

Ondine and many of the core group of Long Covid SOS found each other on Body Politic, an online support group created by Fiona Lowenstein and queer activist friends in the US. Ondine had seen Fiona's emergency flare fired off in the New York Times.

The UK channel of Body Politic became a place of genuine friendship straight away. Knowing we weren't alone was so massive. All of us were coping in different ways, given there was no help for us in the official system. It became clear that only a handful of people had the energy or inclination to become activists. Ondine was the most visible.

In 2023, she told the story eloquently to the Covid Inquiry.

During those days, I was very concerned with the employees of the small organisation I'd founded. To be honest, my life was unraveling, and I barely had time to come to terms with it. But it gave me great comfort that Ondine (and others) were doing exactly what I would be doing if I could.

From early on, I remember listening to Ondine and trying to help her navigate through tough personal dynamics amongst a group of traumatised and ill campaigners. I remember cheering for her, and letting her know that persistence and relentless tail-wagging would eventually get us where we needed to go.

She was able to build a functioning charity, with extremely limited financial resources, but more importantly build an activist team that revived the caring spirit of our support group. And she had a massive impact in everything she did.

Among us spoonies, Ondine shone as someone with a seemingly limitless fount of spoons. (She did struggle with her health, and occasionally need to rest.) She loved to go deep, to network and probe for new possibilities. And she wouldn't take shit from anybody. All things I identified with – that is, the pre-sick me.

But talking to her was like opening a firehose! I became conscious that I actually needed to pace myself in engaging with Ondine and our campaign. This was a recurrent source of grief and regret for me, as my natural inclination would have been to charge the barricades with her, hand in hand.

Now, looking back, I am experiencing a deep sense of loss for not just sweeping away all of my other obligations and dedicating myself to our cause and our friendship. But if I wasn't trying to safeguard what little health and energy I had, I was forced to continue to work to earn money.

That said, I did have lots of good laughs with Ondine, about family, pets (she kept beautiful hens), politics, part-time paid work, the media... We were friends, she felt like a close friend even though I only met her three times in person. I will always remember her laugh, and her move to sweep back her long hair.

At a certain point, we learned Ondine was battling a bigger illness than Long Covid. Later, we learned our time together would be limited. But we never imagined we would lose her as fast as we did. It came as a real shock to us.

My last messages to Ondine were utterly insufficient – my last chats to her, focused on helping with continuing her legacy. But I feel lucky to have been able to give her a big long hug at the end of January.

I promised her I would do everything possible to resource the group and find somebody to take a front-person role, something I could not do.

And just as we pass this five year milestone, and it feels we have been entirely written out of the history of the pandemic and forgotten by our government and wider society, we are in mourning. We are floating in our lifeboat, knowing that we all made it to this point thanks to Ondine. And like Ondine, we will be tenacious, rigorous, never give up, and never forget to laugh.

I'd like to express my gratitude to Ondine's family, who were probably sometimes baffled by her dedication to our cause but supported and loved her. She loved them so much. Our whole community is sending love to them now.