“Do you classify Long Covid as a neurological condition, for everyone, regardless of their symptomatology?”

“Absolutely yes, I think a major component of Long Covid is neurological, and by neurological I don’t mean only central neurological, peripheral neurological….”

“I estimated those costs all together… for the US would be about $3.5 trillion dollars which is a huge amount of money, which just tells you kind of the scale of the number of people who have Long Covid, and how disabling it can be both in terms of their health and in terms of their incomes, their ability to work, and how much medical spending is involved.”

“So here comes the immune system. What are we doing for it? Well, it's inflammatory. It's over activated. And it's basically in hyperdrive. One of the 10 commandments of immunology is the immune system is antigen driven. It doesn't just turn on because it wants to turn on, it is turned on because something pushed the ‘on’ button.”

“We saw really big differences between the patients and our controls in the way that the muscle is able to generate energy using mitochondria. We know that that normally exercise is good for you and the exercise improves the mitochondrial function, but in our patients we saw the opposite happening - that it worsens.”

“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.”

“We are seeing viral persistence in tissues over many years after initial infection and the immune system is not able to completely clear this out. And so now we have to figure out how either we a) can get the immune system to clear this all out, or can we use other modalities - antivirals, monoclonal antibodies, immune-boosting modification, things like that, that will actually help purge these kind of persistent infected cells that we're observing in tissue.”

“We're going to look at our antibody spectrum to do a diagnostic accuracy study. What I expect to find is there'll be groups of patients where some of them have holes around the onset of the of the Long Covid 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.”

“We’re trying to develop clinical trials ourselves, to look at this combination of clinical point testing, where we can actually do that very robust analysis of saying, what's going on in terms of blood gases, what's going on in terms of bicarbonate, what's going on in terms of pH? How is that affecting patients at rest and in movement, and how does that correlate with symptoms?”

“I would word this as a massive public health problem… crisis that most of the world is yawning through and sleepwalking through. I think people are sleepwalking through this because it's too invisible.”

Dr Jim Jackson, research professor of Medicine and Psychiatry at Vanderbilt University Medical Centre, does not believe that Long Covid is all in your mind, but he has found that treating the brain, as if it has a brain injury, can help Long Covid recovery. In this week’s episode Dr Jackson explains his clinical experience of the neurological impact of Long Covid from brain fog to anxiety, PTSD to OCD. He discusses the power of cognitive rehabilitation (which should be viewed as physiotherapy for the brain) and tells us about his book “Clearing the Fog: A practical guide to surviving and thriving with Long Covid”. And he talks us through the power of talking to others within the community: his support groups have been a hugely impactful for sufferers enabling them to learn from each other, learn how to advocate for themselves, and give them hope.

“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.”

“Mindfulness is one of the things we do. Basically, the idea is to allow people to feel like themselves and not to allow this painful, unsettling reality to divert from that. Because even when we suffer, and we do suffer - all human beings, or listeners of this podcast - it's never really perfect, and sometimes it's really horrendous… We are still ourselves.”