This week, Katie joined Long COVID researchers and advocates at the NIH in Washington, D.C., to discuss the future of Long COVID support. (written 09/29/2024)

This week I attended NIH’s RECOVER - Treat Long COVID conference in Washington D.C. It was the first of its kind and the goal was to bring together people in government (US and EU), research, industry, people providing care/support and those with lived experience of Long COVID and other post-infection conditions to:

• Share what we know today about Long COVID, ME/CFS and related conditions

• Consider key questions to explore next

• Inform NIH and government’s support for Long COVID going forward 

It was wonderful to be together with so many top minds in the Long COVID space, and even better to see the prominent voice people living with Long COVID had in the conversation. From my own perspective, I had not been in a room with so many other people who are directly impacted by Long COVID, and it felt amazing to be together with others who completely understand what it feels like to live with Long COVID, and are committed to supporting solutions. What an incredible and inspiring crew! 

My takeaways were:

• Long COVID is real!!! We have a new, agreed on, definition from the National Academy of Sciences. This is a really helpful tool for the clinical community to be able to name, code and recognize it. Definition: 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. 

• Long COVID is a complex, multi-system condition. A number of drivers of Long COVID have been identified, but no smoking gun. This means more research is needed before pharmaceutical interventions that target the causes can be developed. We will explore this more in an upcoming blog post, so stay tuned. 

• Long COVID impacts people differently. There is no “one way” that it looks, as it can activate a range of previous illnesses, injuries or exploit weaknesses in the body.  The common factors are that Long COVID impacts the gut, weakens part of the immune system (B cells) and exhausts others (T cells), and causes inflammation. 

• Action is needed now to support people to manage symptoms and start to get their lives back. We need to think about how the body’s response to COVID can be targeted to help people feel better. 

• We can help. People are having success with focusing on supporting nervous system regulation and other elements that we offer as part of our coaching and support programs. This offers impact now and can complement pharmaceuticals that are developed at a later date. 

• Government is mobilizing. The NIH, HSS (Healthcare Staffing Solutions) and other government departments in the US and EU recognize the huge public health implications of Long COVID. They are creating new structures within their organization to increase the focus and resources devoted to Long COVID. 

We are honored to have been involved in the conversation, and be able to share our perspective from both lived experience of Long COVID, as well as share the success stories around symptom management. It will be exciting to follow up on some of the great relationships and connections from this week. 

The work and the support we offer is not a magic pill, but does offer practical steps people can do now to help them feel better. It will also be an important complement to any pharmaceutical “cures” that are available in the longer term, as people are still likely to need support to restore connections in the body that have been impacted by Long COVID. 

We will keep you updated on progress in the sector. If you are interested in taking advantage of support that is currently available to start to tackle symptoms, please reach out. 

Warmly,  
Katie 

PS. It was so great to connect with other professionals and people with lived experience at the NIH’s RECOVER - Treating Long COVID conference. The scale of suffering is clear - and staggering. Long COVID is complex and impacts people with a range of severity and types of symptoms. The drivers are less clear, and more research is needed to understand why it impacts people and to develop drugs that help. In the meantime, people are having success with interventions like ours that support nervous system functioning and help people’s bodies to function better. Government is putting clear efforts behind finding a “cure”. In the meantime, reach out if you want to explore near term options for symptom management.