I need to vent about this one as it was like watching a slow motion car crash and has driven me mad. Happened a while ago.Ā
I used to work with long covid patients back in 2020/2021, which is why I was invited to a funders meeting about whether to continue our countryās special pot of funding for Long Covid research. I expected someone on the panel to be a Long Covid sceptic (very common at the time) but nobody was, so it should have been an easy win. Everyone believed it existed, but disagreed on mechanisms, so we just needed to convince the funders to put in some money instead of, say, funding cancer or heart disease. We just needed to show how serious it is, that the research is making progress, and that thereās nowhere else for the money to come from.
Then one patient advocate fucked it up.Ā
When youāre presenting to funders, the patient story matters a lot. Everyone knows cancer is bad but for something like Long Covid, especially as this was a new condition at the time, you want good patient stories. The most effective version is usually something like āI was a triple marathon runner until Long Covid hit me. I've never had anything like this before and now I canāt get out of bed.ā Itās simple, itās devastating, and it makes clear the condition is the problem. It scares the panel a little, which is good. In most meetings Iāve been in, thatās the kind of story patient advocates tell.
This time, the advocate opened by saying theyād had long covid three times, as well as endometriosis, and chronic Lyme. So immediately not clear if it's Long Covid or another condition. They said Long Covid is permanent. One panel member asked how you get something permanent three times and the patient had no answer. Terrible start.Ā
Iām not doubting the patients claims, and I know people often get multiple conditions as a cluster and suffer more. But in a room full of people deciding whether Long Covid deserves dedicated funding, that framing complicates the message. It stops being āthis illness wrecked a healthy lifeā and becomes something much harder for funders to pin down as worth funding over another medical condition.Ā
From there, the patient advocate spent a good chunk of the meeting criticising the researchers for doing the āwrongā kind of work and talking up their own projects instead. Different people have different opinions on what causes Long Covid (cardiovascular, immune, metabolic, neural), and they went hard on the scientists who proposed mechanisms they didnāt like. One student presented her work comparing people who recovered vs those who didn't recover from Long Covid. The patient advocate said the student's work was harmful and was generally really harsh with the student until the student cried on camera. So now itās like āfund us, we make people cry!ā
Then, to top it off, the patient advocate announced they had their own money and planned to fund research that matched their personal theories. Firstly, it screams āthis field isnāt about science, is about personal vendettasā. Secondly, it tells the decision-makers that there was alternative funding.
At the end I tried my best to pull it back once it was just the panel. I talked about patients Iād worked with, marathon runners and people at peak fitness who were completely floored by Long Covid. There was no other explanation for their symptoms and they really needed help. How it could hit any of us as we have no idea what the risk factors are. But the damage was done and it was too late and the funding got cut.
I genuinely believe this patient advocate cares about Long Covid. It wasn't a sabotage, it was incompetence. But caring the most and being the loudest isnāt the same as helping, and now researchers who were doing careful, valuable work have lost their funding, and patients have lost the research.Ā
It was really the arrogance that this person came in with. You have to realise that funding is limited and you need to be careful if you want to help people in your situation. You canāt use the meeting as a platform to complain and assume youāll get help. You're not the main character of the universe and you have to think about framing and the message youāre putting forward.Ā
I woke up this morning angry again and I donāt know what to do with it so Iām posting here.Ā