“The number one symptom that people present with when they've got Long Covid or pernicious anaemia or iron deficiency is fatigue. So that is across the board in all three conditions. And then the second most common symptom is shortness of breath, palpitations, dizziness, fainting, difficulty sleeping, brain fog, pins and needles joint pain, depression and anxiety…”

“They found that the strongest signal was coming from serotonin. Peripheral serotonin levels were very similar between those who are acutely active with Covid and those who had Long Covid and much lower than those who had recovered from Covid and did not have persistent symptoms.”

“The first year of this was recognising the problem and getting people to buy into that... The second year of this was describing who was most likely to get this condition. The third year of this was laying out potential biology. The current era of this now needs to be proving that each of those mechanisms is or is not driving this and… you actually have to intervene on those pathways to see if you can change either a biological measurement or change how people feel. What that means to us is doing trying to do these intense proof of concept, experimental medicine type studies, where we identify a target pathway that we think it is contributing, then we try to alter it by giving an investigational treatment and we see what happens and whether our hypothesis was correct.”

“If we’ve learned anything, this is not something anyone wants to get… The fact that there's a genomics that underlie Long Covid tells you how real it is, right? And then the fact that we will get treatments to people, all these things reinforce how big an issue.”

“The conventional model is trying to identify what disease does this person have, and then you treat the disease. Well, that may work in some situations… but there are many situations involving chronic illness in which that doesn't work. And I've evolved and taught other approaches to diagnosis, something that I call person-centred diagnosis.”

“We have always been focusing to find something which is detectable and when we talk about something detectable we are actually talking about something which is produced more - this is called as gain of function. But…sometimes loss of function is also important.. there is one switch which is where we are actually losing something from ourselves.”

“This is a systemic illness. MECFS is a systemic illness. It is a systemic illness. These are all connected, and that's part of the reason why post viral illness is basically impossible to treat.”

“There are so many questions that are unanswered about Long Covid. We're just scratching the surface of this disease.. that's why it's dangerous to come to a conclusion at this stage - because we know so little. It doesn't mean that we aren't looking. We're looking very hard. I'm obsessed about trying to understand this disease, and many scientists are, so hopefully will chip away at this disease. But we need to be open minded and humble about what's going on.”

“So what's really very different about it is its novelty. And I definitely feel that that one of the things that this pandemic taught us is that viruses can lead to long term manifestations.”

“As I expected SARS COV-2 has produced its own mini epidemic of chronic fatigue syndrome.”

“We're tracking heart rate variability, heart rates, and we're also tracking posture as well. It's a really important one. We know that underlying these conditions is some level of dysautonomia, I think 70% or so people with Long Covid would qualify, or would fail the NASA lean test.”

“I think we will end up in a position that we accept that Long Covid is multiple different conditions that are triggered by the same virus, but result in different consequences.”

“So we know that the clots are much more resistant to proteases that normal clots are - that's kind of expected. They're not totally totally resistant, otherwise you'd really be in trouble, but they are significantly more resistant. And the consequence is that therefore they hang around, they can go and do bad things..”

“There's some kind of indirect evidence suggesting that the sympathetic nervous is dysfunctional in POTS or Long Covid patients, and given the post-infectious nature, I suspect this is some kind of inflammatory, maybe autoimmune, reaction… probably our body is attacking our sympathetic nervous system”.

“Each of these molecules just by itself is already pretty good in tackling Covid conditions, inflammation, organ damage, and many of these pathways. So for us, then the next question was - is this mix of nine molecules, from the pharmaco dynamics and from the safety profile, is that viable?”

“.. if people realise that Long Covid is basically an immuno-compromised state, akin to immune compromised status of having HIV then I think …. it will actually change the course and the political momentum.”

“In ophthalmology there is a sentence - the eye is the window to the body - that’s a common theory which we use in our normal clinical life”. So could we use the eye to diagnose Long Covid?

We speak to Frances Simpson one of the founders of the Long Covid Kids group and also to two young friends about how Long Covid has affected their lives.