Thread by @CureLongCovid

I met with the program managers of the 2 other Long COVID programs in Boston yesterday, Boston Medical Center and Beth Israel Deaconess. We are planning to pool our resources to help fill gaps in care for LC patients.
I’ll share some takeaways
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Long Covid programs are hard to find and poorly advertised, even in our area. There is a lot of confusion as to who has programs and what each program offers. This is due in large part to hospitals closing LC programs that existed in the earlier part of the pandemic.
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Some hospitals and centers that call themselves a “long Covid program” offer few services, often it’s limited to rehab services (PT, OT, SLP)
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We are the only Long Covid clinics in New England and serve people from Massachusetts, Rhode Island, New Hampshire, Vermont and Maine. Those states currently have no resources for patients that we’ve been able to identify
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We are overwhelmed. The demand is high, wait times are long and there are not enough providers who are both knowledgeable about LC and interested in treating it. There are very few primary care providers and specialists who want to take on long covid. We are often their only long covid contact
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We know the reasons for this- providers are overwhelmed with patients, it’s a novel disease, concrete treatments don’t exist yet and the patients are clinically complicated
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Mental health and psychiatric support is gap across all of our hospitals. It was stretched thin before and now it’s impossible to find providers. And when you’re living with a novel, debilitating, chronic illness, it’s one of the greatest needs
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Across all programs, the patient population is young. This disease affects people who are balancing work, family, social lives and obligations. Many were very active and athletic. Not only do they want to get back to normal activities, they HAVE to, livelihoods and families depend on it
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WE SEE PEOPLE GET BETTER AND RECOVER.
We are all still very optimistic that when research yields treatments, many more people will recover
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We are in a limbo right now- the definition and symptoms of the disease are coming into focus. But we don’t have tests, biomarkers or solid treatments. This is very frustrating to patients when they come to the clinics
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We all have goals of care being pushed out into the community so that patients can see providers local to them and those providers are knowledgeable about what tests to run, which specialists to refer to and treatments they can start.
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We need more telehealth options.
We need to decentralize research.
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Every program should have a case manager to help with work/school accommodations and short/long term disability funds.
Every program should have a social worker.
Every program should have support groups and ways for patients to connect with each other
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To effect these changes we:
- are members of the Boston COVID Recovery cohort. This is a consortium of LC patients, community members, patient advocates and healthcare workers. They are taking concrete steps to identify needs, develop plans and work with legislators. I can’t say enough good things about their work. Please check them out

12/bostonrecover.org/bcrc

We have presented to community health workers, to educate them to recognize symptoms of long covid and to direct them to resources
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I’ve done presentations for the Mass Rehab Commission (vocational retraining), rehabilitation services across Mass General Brigham and the American Speech Language and Hearing Association (ASHA)
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I’m part of @AHRQNews Long COVID Care Network to share best practices and resources with 12 new Long COVID clinics.
There is a lot of activity at the local and state level in Massachusetts and at the federal level
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@AHRQNews I’m trying to end this on a positive note, but it still feels woefully inadequate in the scope of *gestures* everything.

We all work with amazing doctors and researchers who continue to inspire with their kindness and hard work.
As the world “moves on” from COVID 😡😡 It makes a difference to know that there are good people working on it
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What really keeps us going is you. LC a terrible condition and it sucks. It sucks to have your life upended. It sucks not be able to do your normal activities. It sucks that you’re gaslit. It sucks that people aren’t taking covid precautions. It sucks that there are no answers and it sucks that the future is uncertain. It’s not fair.
So that keeps us going.
Sending you all love and strength
💙💙💙💙
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