Key Insights from the NIH RECOVER Conference: What’s Next for Long COVID?

Last week, I was able to attend the NIH RECOVER - Treating Long COVID conference in Washington, D.C. It was the first of its kind, a groundbreaking event, gathering experts from government, research, industry, healthcare, and those with lived experience of Long COVID and other post-infection conditions. Together, the group discussed what we currently know about Long COVID, key areas for future research, and how governments can better support those affected by this complex condition.

Being in a room filled with top minds in the Long COVID space was inspiring, but what made the experience truly powerful was the prominent voice given to those of us living with Long COVID. For me, it was the first time I was in a space surrounded by so many people who truly understand what it’s like to live with a post-viral condition. The sense of camaraderie and shared purpose was humbling and energizing.

The initial sessions shared stories from people living with Long COVID, and also noted the vast number of people impacted - over 400 million world wide. The scale of the public health crisis is enormous. Poor and ethnic minority communities have been hit hard, but we know this condition is impacting people of all ages and backgrounds. Moreover, the risk of someone being impacted by Long COVID increases with each repeat infection, so more and more people will face health challenges over time. Shockingly, clinical professionals do not always recognize the condition, or believe patients.  

An agreed definition of Long COVID has been developed thanks to efforts from a working group under the National Academy of Sciences. The definition is broad enough to cover the range of ways Long COVID presents and stand up to new understandings that may emerge. Having an official definition is important because it facilitates conversations and understanding in the clinical and research spaces, and gives people impacted a definition to share with people providing care. 

Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARSCoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.

This is a helpful step forward as it acknowledges that Long COVID is real (can’t believe that is needed, but it is!) and gives clinicians a common definition to use for diagnosis.

Evidence clearly shows that Long COVID is a Complex, Multi-System Condition. We now know that Long COVID affects multiple systems in the body. While several drivers of the condition have been identified, no single “smoking gun” has emerged, meaning there is still a lot of research to be done before targeted pharmaceutical treatments can be developed. We will explore the drivers of Long COVID as part of a future blog post.

Long COVID looks different for everyone. It can trigger a wide range of symptoms and conditions, depending on the person’s pre-existing health. However, there are common threads: Long COVID affects the gut, weakens B cells (a key part of the immune system), exhausts T cells, and increases inflammation. It also impacts the nervous system, which impacts how our body and brain communicate and how our body functions. It can also impact endothelial cells, leading to a narrowing of blood vessels, which impacts circulation and puts people at increased risk of heart conditions.

Researchers are seeing examples of lingering virus, or viral fragments in body tissues, for some people even years after an initial COVID infection. They are seeing this in people who have Long COVID symptoms as well as those who do not present with symptoms. More work is needed in this space, but it can be tricky to gain access to tissues to test for this as a biopsy is required and autopsies need to be done shortly after someone has passed to measure viral presence, which is often outside of normal research procedures.

The discussions over the three-day conference covered many topics, but concentrated on 4 main themes.

1. The lived experience of people with Long COVID, and other post-viral conditions. There were inspiring representatives from the Long COVID community who attended in person and virtually. They shared stories of lives interrupted, financial challenges and families being impacted - of how difficult it now is to do even basic daily tasks. These are harrowing, and all too familiar to those impacted by the condition. There was a helpful recognition that there is a lot of overlap with other post viral conditions and that it is important to work together as a community to support each other, share what we know already and encourage research and solutions. 

The main symptoms of both Long COVID and ME/CFS include: 

• Cognition, mood and sleep disorders - Brain Fog; Executive Dysfunction; Anxiety/Depression; Agitation/Psychosis
• Dysautonomia - Palpitations; POTS; Hypotension; Hypothermia/fever
• Pain syndromes - Myalgia; Neuropathic Pain; Paresthesia; Headache/Tinnitus 
• Exercise intolerance - Muscle Weakness; Intolerance to Given Levels of Exertion; Fatigue 

2. Questions about what drive Long COVID remain; this is a focus of research. A number of factors have been    identified that may be driving Long COVID. It may be that multiple issues are impacting people at the same time. More research is needed to understand these further, and to understand if and how different populations are impacted differently by some of these underlying factors. This could help pharmaceutical companies to pinpoint drugs to help down the road. However, given the multi-system nature of Long COVID there is still a sense that steps to support rebuilding brain-body connections and repair damage will be important complements to pharmaceutical interventions.  

3. Government and research is focused on pharmaceutical solutions, which will take time. The NIH, FDA, many researchers and pharmaceutical companies are focused on trying to better understand why and how Long COVID impacts the body. This knowledge and insight can then be shared with pharmaceutical companies so they can start to design drugs - or repurpose existing ones - that address those issues. This has been an effective approach with other health conditions. That said there was a recognition that this process is likely to take time. Government is committed to supporting and accelerating the process where they can, but noted that we are no longer in an “emergency” stage. This means that, unlike the approval for COVID vaccinations, normal approval processes will need to be followed. Steps would likely take 5-10 years.

A small part of this conversation was an important debate about whether research and solutions should be focused on understanding the details of what drives the complex disease that impacts people in different ways, or focus attention on tackling the body’s response. There was, rightly, concern that drugs that simply dampen the immune system to reduce inflammation may be risky for people to take. However, we know from our own experience and from speaking to others at the conference, that focusing on the body’s response has an impact for people in the near term, does not require pharmaceuticals and can improve the functioning of important systems in the body. In time, non-pharmaceutical measures may complement pharmaceutical care much like recovery from surgical interventions doesn't end when people walk out of the hospital. 

3. Ask from the Long COVID community to support steps that help manage symptoms now. There was a concern from the patient community that people impacted by Long COVID don’t have time to wait 5-10 years for a pharmaceutical solution. They called for a two pronged focus for research on longer-term pharmaceutical “cures” as well as near term options to manage symptoms and gain functionality. 

Based on our experience, and that of researchers we connected with, people are able to reduce their symptoms now by focusing on steps that support vagus nerve functioning and improve brain-body connections. We have experienced this first hand with our clients and with Katie’s experience. It has been fantastic to connect and speak with so many other professionals who are finding similar results.

We are excited about the energy, talent and momentum being developed to support people with Long COVID. That said, it was clear that a magic pill might be some years away. This is leaving people to find their own solutions in the meantime, through their doctors, specialists or coaches like us. 

Warmly
Katie