Since late 2019, people all over the world have heard of COVID-19, or coronavirus. Since then, it has been a part of our lives, dominating the news and resulting in a growing number of infections and deaths worldwide.
Meanwhile, we know more about the virus, its ways of spreading, and the symptoms it causes. In this context we also learned about a new development: Long COVID. People who have had COVID-19, and are on the mend, start to experience similar symptoms once again, while their test results are negative, and their platelet counts are normal.
To learn more about Long COVID, we turned to the Long Covid Alliance, a network of patient advocates, scientists, disease experts, and drug developers. They have joined their collective knowledge and resources in order to educate policy makers and accelerate research to transform the understanding of post-viral illness. We spoke with Emily Taylor, Vice President of Advocacy and Engagement at Solve M.E., co-founder of the Long Covid Alliance.
Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.
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Could you please say a little bit about yourself and about Solve M.E., and explain how Solve M.E. and the Long COVID Alliance are connected?
I am a caregiver for my mother who is a patient with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. She’s been sick since 2008, and she got sick from a virus. So, I’ve lived the world of a post-viral illness patient, I’ve walked in those shoes and been to the many, many doctors, experienced the challenge of finding medical care, finding support services, and that’s what brought me to this work. Before my mother got sick I worked in Washington DC on Capitol Hill, so I decided to take my skill set in policy and government and apply it to changing the experience of people, like the horrible experience my mother has had and continues to have.
I came to Solve M.E. in 2015. I love my job. I’m very lucky that I can bring my passion for change to my work every day, and Solve M.E. is a national non-profit for ME/CFS and post-viral diseases, so I was a post-viral disease expert before the pandemic broke out. And we decided we really needed to work together with all of the other organizations and drug developers, and as a non-profit we wanted to reach across to the for-profit world. We wanted to reach across to the government world. We wanted to reach to individual patients and use their experience and stories to help fuel our work.
So, we co-founded the “Long COVID Alliance” with two other organizations: the “COVID-19 Longhauler Advocacy Project” and the “Global Pandemic Coalition”. These two organizations joined together with us and in about six months of working together we decided we needed to form this alliance. We started with 21 different organizations, mostly non-profit health organizations, and we now have over 1,000 members from all over the world, from all over different subject matter experts. People who are doctors, people who are drug developers, researchers, regular patients who are just trying to find help. We have everybody, and that’s the whole purpose of the “Long COVID Alliance”. It’s to bring everyone together to work on our common goals collectively, and what we’ve accomplished so far has been a lot.
We were one of the organizations that were lobbying congress for additional research funding, and so we were part of the team that helped secure 1.25 billion dollars in research funding from the US Federal Government which has now gone to the National Institutes of Health here in the United States. And we were also helpful in getting several bills introduced in Congress that are still – fingers crossed – making their way through. We’ve also been an advisory force that has been helping researchers and clinicians connect with patients and providers to learn more and help share information about how what works for Long COVID patients, what doesn’t work for Long COVID patients, what are red flags, if you see a patient experiencing certain types of symptoms what should you do. All of that information is what we help share among our thousand members.
Could you please explain what Long COVID is? What are the causes and what are the main symptoms?
Long COVID is an umbrella term. It describes a lot of different post-illness or post-acute infection illness symptoms and experiences. So, no one person with Long COVID is the same as another person with Long COVID, and what we’re discovering is that we really need to find different treatments for all the different experiences and different types of Long COVID. So, I like to refer to Long COVID as a little bit of a rainbow with a lot of different colors and flavors in that rainbow.
For example, Long COVID includes people who have Post-ICU syndrome, people who were hospitalized in the emergency room and/or in the ICU, the intensive care unit, and have damage as a result to their system from that stay. There are people who have damage to their hearts, to their lungs, to their liver, to all sorts of organs from the actual experience of COVID. There are also people whose bodies have changed, fundamentally changed, after experiencing COVID, and they are now experiencing something like a post-viral infection or post-acute viral infection, which are these post-viral illnesses we talk about. This includes mast cell activation syndrome, dysautonomia, forms of dysautonomia including POTS, which is postural orthostatic tachycardia syndrome.
And, unfortunately, in about 46% of patients with Long COVID, we’re seeing ME/CFS, which is myalgic encephalomyelitis/ chronic fatigue syndrome, which is what my mother has. And that’s the area that I’m particularly interested in because I have the most experience in that. But we’re seeing people come down with a range of these symptoms, sometimes multiple syndromes at once. All of them, what they have in common is they’re triggered by an initial infection, some sort of a systemic shock, like getting COVID-19, that changes the way the body operates afterwards, and that can include over 200 different documented symptoms.
Long COVID is a collected experience of illness that follows after a COVID infection. And our job is to peel the different types of those illnesses, to put them together, to understand them, to research them and ultimately get treatments and cures out there faster so that these folks can get better. The one thing I will add to this about why this is such an urgent issue, why are we so fervent to do this quickly, is because what we know from other post-viral illnesses before the pandemic, is that there is a timeline, and when people get the virus, it sort of starts a ticking clock.
And in about four years’ time after a virus, if they experience these post-viral symptoms, this sort of starts to become permanent. And we can actually see fundamental biological changes in people’s bodies from the early stages to the mid stages to the end stages. And there’s no real recovery after that point. The recovery rate is only about 4% after that point. So, we’re really urgent. We feel this time pressure because we’re already two years into the pandemic. And there are people who have been sick for two years already. And we see that we have 18 months to two years to get them a cure or a treatment, or they might stay sick for the rest of their lives.
You just mentioned body changes. Are there mental changes as well?
There can be, but what I would caution to say is that the physical changes drive the mental changes. The way I’d describe it is if you woke up one morning and you were suddenly disabled, you suddenly couldn’t walk, you suddenly couldn’t think, you suddenly couldn’t do your job; that would change you. And so I like to talk to patients and say there’s a bit of a mourning process, like the way you would mourn the loss of a friend, the loss of a loved one, the loss of a pet.
You have to mourn the loss of your functionality, that you are no longer the healthy person you used to be, and you have to come to terms with that. And that is incredibly hard. Depression and anxiety and other mental health comorbidities can come from that experience. And it’s made even worse. We were chatting a little bit before the call about how many doctors and many people don’t believe this is real. So, could you imagine if you woke up one morning, you’d lost the ability to walk and everybody around you was telling you: “Well it’s all in your head, you should just be able to walk, just try harder.” And how do you internalize that and how do you live in that life?
There is absolutely a mental health component of this experience. But, in my opinion, that mental health struggle comes from being sick and not able to get well, and not being believed that you’re sick, and the damage that causes definitely has a mental health impact. But it does affect the brain. We don’t know how yet. It’s very possible that this virus is changing people’s brains fundamentally. And we’ve seen presence of the virus in the brain through postmortem studies and live studies with biopsies. We know that the virus gets into the brain, and we still don’t know what it does there when it gets there.
You said that no one person with the COVID infection or with Long COVID is the same. So, what does this mean for treatment? How is Long COVID treated at the moment? Is there a treatment?
There is no FDA-approved treatment. There is no single cure. Right now, it’s a bit of a scattershot approach or a shotgun approach with throwing a lot of different things at these problems to see what works. One thing that we know for sure is really helpful is what we call pacing. It’s a lifestyle change or a treatment mechanism in which you wear a wearable or another mechanism to monitor your body. And when you feel your heart rate starts going up, when you start feeling bodily changes because of the activities you are doing, you stop, you rest and you bring yourself back to baseline before you exert yourself again.
And that’s really important because what we’ve found is with patients that try to push past their limits, patients that are just “I don’t care if I’m feeling bad, I’m going to power through and I’m going to suck it up.”, those patients get worse in the long term. They tend to do, they tend to have poorer outcomes. They tend to get sicker faster and sicker for longer. And as opposed to people who stop, who rest, who then pace their energy levels, despite how bad they’re feeling, and really stay within what their body is telling them is their energy limit now, those folks tend to have better long-term outcomes. So, that’s one thing we can tell so far is pacing; resting when your body is sick is so important and key.
Is there research into drugs as well?
Yes, there are quite a few clinical treatment options that are being researched. Some are even in phase III clinical trials, but nothing has definitively come out yet. One drug that is showing a lot of promise is a drug called Ampligen that is not yet approved for treatment in any other country except Argentina. It’s not because it’s not safe. The drug has been shown over and over again to be safe. The challenge is proving it to be effective against these particular illnesses, and in early studies, it showed that about 40% of people did respond very well to this drug. But more testing is needed. It’s still not out. So, that’s just one of many I could talk about. There’s also low-dose naltrexone. There’s a couple of other treatments that are being explored, including hyperbaric oxygen chamber treatments. There’s lot of different hope out there, but none of them has passed the finish line to be an approved treatment yet.
What does Long COVID awareness mean for people with other chronic diseases with viral triggers? For example, myalgic encephalomyelitis and chronic fatigue. Do they profit from this new awareness?
Absolutely. We have a phrase or a saying that we say “A rising tide lifts all ships”, and this rising tide of awareness, of financial resources, of support is lifting all of the post-viral illnesses together. And I will say, one of the silver linings of this crisis that I hope we take away and keep with us as we move forward past it, is the fact that all of these illnesses, Long COVID has brought us together. Before the pandemic, I think, there was a lot of siloed research in this area. People looked at just ME/CFS or just POTS or just dysautonomia, and now these researchers are starting to compare notes, are starting to work together. Us in the patient advocacy community are starting to work together, to combine our common stories and then pool our common strengths. And that is really wonderful. We’re making great progress, and I think we’ve accelerated progress, thanks to all of us coming together. And that I really, truly believe is going to get us cures faster because we are pooling our resources and working collectively towards a common goal together.
Do you think that there will be a cure for Long COVID in the future?
Truly, we have several different major hypotheses about what causes this illness. Is it a latent viral load? Is it inflammation? Is it the virus in the brain causing trouble there? We have a lot of different theories and we’re together checking the boxes about those theories, each one together, and using our common resources to do it faster. And obviously, we still need more. We’re not there yet, but we’re on a path where I can see a light at the end of this path that involves full druggable targets and FDA treatments, and I will say this is a call to my brothers and sisters and friends in the pharma industry. We need you. We need your partnership. Some pharma folks are really getting involved. But no one, no one brings a drug to market like the American pharmaceutical industry. It is a massive Goliath. And when they pivot – and they’re starting to -, when they pivot to truly invest in this issue, we will have all the components we need to get something out fast. So, we’re really getting close. And hopefully soon enough to help. There’s so many millions of people who got COVID and so many millions of them who still struggle with symptoms. And that’s really what it all comes down to, is making sure those people get their lives back.
Thank you very much for the interview, Emily.