Thread by @CureLongCovid

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LONG COVID CLINICS:
Let’s talk about them. They get a lot of criticism in the Long COVID community and that’s fair.
Clinics are understaffed, wait times are long, they may not offer concrete treatments and you can end up seeing providers who know less about Long COVID than you do.
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We are not perfect here at Brigham and Women’s, but we might be the largest and “oldest” Long COVID clinic in the country so I’d like to tell you what I have learned along the way and the 10 things that I think every Long COVID clinic needs.
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We started our clinic in March of 2021. When I interviewed for the job I asked “what happens to this job when Covid is finished, now that the vaccines are coming out”
And they were like “HONEY. Oh honey. COVID isn’t going anywhere. We are going to be dealing with COVID and Long COVID for YEARS”
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That brings me to the first thing every LC clinic needs:
1. Buy in and support from the institution- we have that big time at BWH. Our program is built into the Dept of Medicine budget, it’s not dependent on outside funding or “special discretionary spending”. The hospital supports our roles in the clinic and continues to add more staff. This won’t be yoinked away.
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2. Patient Navigator- COVID is a novel virus, LC is a novel illness, it doesn’t fit neatly into one sub-specialty and most people with LC with need to see multiple providers.
It’s not easy to coordinate care like this under the best of circumstances
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Patient navigators know the institution. They know the providers, they know where LC resources are and they understand Long COVID. The navigator serves as the hub of the wheel, coordinating the complexities of getting care and resources
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3. Build a community. This is so important. Most people with LC are the only person they know with LC.
We have very few treatments to offer people. Research is in its infancy. And people wait a long time to see specialists.
This is how we build community…
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- Support Groups twice a month
- Caregiver Support Group
- Guest lectures from experts
- Weekly newsletter detailing LC in the news, research and upcoming events
- Dropbox of resources. LOTS of them. Symptom management, community supports, research opportunities and more
- Discord server for people to connect based on commonalities (location, subtype of LC, former athletes, LGBTQ etc
- A patient led group text to reach out for supper and answers
- Community partnerships (more on that in a sec)
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As soon as someone completes intake, they have access to all of these supports. It’s important to have help and resources RIGHT AWAY. Not 6 months from now when they finally see a provider
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4. Social worker/case manager/disability assistance
5. Mental health support

Our program needs more of this, we have had a SW position open for 18 months. It is very hard to access mental health support, particularly providers who understand chronic illness
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6. Providers willing to prescribe off label medications and try new things. Physicians are scientists and often loathe to prescribe treatments that haven’t been fully researched and vetted.
BUT. That’s what patients need.
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7. HEALTH. EQUITY. Most LC clinics are part of large research hospitals that serve the wealthy and the white.
There are so many barriers to care. Clinics are all weekdays during work hours, parking is expensive, interpreter services are inadequate. We have to do better at serving the community…
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We need weekend clinics, evening clinic, parking vouchers more than that though, we need to push care into the community so that people can receive care from their local clinic with providers they know and trust. Send the specialists to community health centers for clinics.
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8. Research and access to clinical trials
9. Invest in more staff. And then add more staff. People have been sick for 3-4 years then have to wait 9 more months to see a doctor or have a specialized test performed 😭
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10. Partnerships- we partner with the Boston COVID Recovery Cohort that includes 7 hospitals, community representative, patients and advocates and legislators. The goal is to help more people in the community and to train primary care providers on LC.
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I’ve partnered with the Long COVID program managers at Beth Israel Deaconess and Boston Medical Center to pool our resources and knowledge so that patients can benefit from programs and groups or providers at other hospitals
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We have received several generous gifts from donors.
We used a gift to partner with a mindfulness coach who recovered from LC. She has classes and groups to learn mediation and calming them the nervous system,
Patients were able to get these services free of charge from us
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We are also using a gift to sponsor patients to receive specialized physical therapy for LC, POTS, dysautonomia from an amazing practice that does virtual visits 😭
This will allow people who are bed bound, home bound, in rural areas and covid conscious. This is the model needed for fatigue and PEM.
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I am on the @AHRQNews Long Covid committee to advise new LC clinics about what we have learned from persons with LC, best practices for LC clinics and how we manage our data
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We have a very robust and supported Long COVID program at BWH. But I know I fall short every day and feel guilty that I can’t do more because I’m one person doing the job of 3 people. Maybe 3.5 people. But it’s good work and it’s important work and I feel grateful to be able to help people.
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- if you’ve stuck around, thank you for reading! 🩵🩵🩵