Julie Sullivan @CureLongCovid Twitter profile | Pikagi

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Julie Sullivan

@CureLongCovid

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Program Manager of The Covid Recovery Center at Brigham and Women’s Hospital in Boston MA. Opinions are my own. Here to advocate and educate (she/her) 💕

Boston, MA

Joined March 2024

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@CureLongCovid

Julie Sullivan

9 days

🧵🧵🧵 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

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@CureLongCovid

Julie Sullivan

3 months

Listen to how WEIRD this is. We have a patient who has consistently tested positive for COVID for 90 days now. In addition, they are symptomatic with fevers, headaches, brain fog and fatigue. 1/

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@CureLongCovid

Julie Sullivan

10 days

It’s only October 11th and we now have 3x the number of referrals to our Long COVID clinic than usual. THREE TIMES MORE. 50% of our referrals contracted COVID in 2024. Of those, half contracted COVID over summer 2024. COVID prevention is the only to way to prevent Long COVID.

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Julie Sullivan

5 months

Actual note I just read from a neurologist who advised against autonomic testing: “I suspect this is most likely a post viral/inflammatory type syndrome. I certainly think there is a very good chance she will improve over time. There is nothing from her history or exam to suggest

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@CureLongCovid

Julie Sullivan

3 months

WHY IS THIS SO HARD 6/6

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Julie Sullivan

5 months

I will be able to get this patient seen in a timely manner by an autonomic neurologist. BUT WHAT ABOUT EVERYONE ELSE WHO DOESN’T HAVE A LONG COVID PATIENT NAVIGATOR ADVOCATING FOR THEM. 4/

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Julie Sullivan

3 months

Here’s the weird part- this patient is being turned away by the labs. They won’t do a PCR test. Even though she’s symptomatic and has doctor’s orders 🤔 3/

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Julie Sullivan

3 months

Urgent Care didn’t want to do it either! They indignantly accused the patient of trying to use urgent care “as a lab”. They finally relented and did a rapid PCR. 5/

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Julie Sullivan

3 months

Our wonderful doctors in Immunology and Infectious Disease are going to see this patient and requested some labs including a PCR test for Covid. These orders were placed for the patient. 2/

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@CureLongCovid

Julie Sullivan

5 months

Y’ALL. We are in our FOURTH year of the pandemic and this is how it is in BOSTON, where we have Harvard Medical School, so many esteemed hospitals and we are a center of Long COVID research. 5/

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@CureLongCovid

Julie Sullivan

4 months

Pfizer’s next anti-viral for acute Covid infections is Ibuzatrelvir. It does not need a boosting agent (like ritonavir) and does not have the drug interaction precautions that Paxlovid has. This will be easier for people to tolerate than Paxlovid. @Pfizer Now in Phase 2!

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Julie Sullivan

3 months

They keep turning the patient away stating that they can only get a PCR in a physicians clinic. The patient finally went to urgent care to request a PCR 4/

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Julie Sullivan

5 months

We sent her for autonomic testing. And it showed small fiber neuropathy and very clearly POTS. It wasn’t borderline at all. SO, we referred her to an autonomic neurologist to review the results and manage her care 2/

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@CureLongCovid

Julie Sullivan

3 months

Have any of you had trouble getting a PCR test? This is bonkers

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Julie Sullivan

2 months

No but seriously. What is the hold up with authorizing distribution of the Novavax vaccine?

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Julie Sullivan

2 months

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 1/

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@CureLongCovid

Julie Sullivan

5 months

Some good news: Mass General Brigham has expanded and centralized their Small Fiber Neuropathy and Autonomic Neurology program by hiring a great director, several more autonomic neurologists, PAs and RNs and they are building an additional lab. I’m very grateful to work here 🙏🏻💙

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@CureLongCovid

Julie Sullivan

5 months

They declined her referral and didn’t schedule her based on: 1. The neuro notes prior to her autonomic testing 2. “She’ll probably see Dr. —-“ Btw, Dr. —- is currently not taking new patients and if they are, new appointments are booking into mid/late 2025 3/

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Julie Sullivan

27 days

I can’t get over how weird it is to sit in a room full of people living with LC, talking about it and researching it without wearing a mask. During a surge and a push to promote the newest vaccines 🤯 feels disrespectful to people with LC #RecoverTLC

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@CureLongCovid

Julie Sullivan

5 months

I’d like to share information about our Long COVID program at Brigham 💙 Brigham and Women’s Hospital is in Boston MA. Like New York City, we had a a surge of early cases of COVID. Multiple units were converted to ICUs. Brigham also has 14 ECMO machines 1/

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Julie Sullivan

28 days

Dr. Al-Aly @zalaly masked for his presentation. Leading by example. Love to see it 💙 #RecoverTLC

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@CureLongCovid

Julie Sullivan

5 months

Let’s talk about Neuro inflammation and Long COVID. We have patients who are very clearly experiencing this with migraines, visual changes and floaters, tinnitus, vestibular issues etc. The symptoms present as expected if there is a disruption in the blood-brain barrier. 1/

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@CureLongCovid

Julie Sullivan

3 months

I spoke to one of our pulmonologists today who is on inpatient/ICU service. There are several people currently on ventilators right now due to COVID-19. Stay safe out there please 😷🩵

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@CureLongCovid

Julie Sullivan

2 months

Oh here’s a new one. Did you know there’s an ICD-10 code called “Feared Condition Not Demonstrated”? That was the “diagnosis” for someone presenting to urgent care with Long COVID symptoms. Z71.1

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@CureLongCovid

Julie Sullivan

7 days

I often read about people being “discharged” from their Long COVID program with the “explanation” that they have nothing more to offer them. This is wrong on every level. A Long COVID clinic needs to be more than just a place to see a doctor. It is a place of community, a way to

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@CureLongCovid

Julie Sullivan

4 months

I just spoke to a patient with CLASSIC TEXTBOOK LONG COVID. On her referral, her PCP said “this patient is a convinced they have long COVID” 🥵

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@CureLongCovid

Julie Sullivan

5 months

@forlornprairie WHY. I have told patients, thank goodness men get long covid, otherwise would we even care? 🤷🏼‍♀️

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@CureLongCovid

Julie Sullivan

12 days

We are on track to have DOUBLE the number of referrals to our Long COVID clinic. I think it will end up being even higher than double. I attribute this to the summer surge and low numbers of people who got the 2023-2024 vaccine to protect against Omicron and its variants.

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@CureLongCovid

Julie Sullivan

5 months

@julips14 “Welp. Too sick. Good luck!” That’s AWFUL

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@CureLongCovid

Julie Sullivan

2 months

We need more telehealth options. We need to decentralize research. 12/

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@CureLongCovid

Julie Sullivan

2 months

WE SEE PEOPLE GET BETTER AND RECOVER. We are all still very optimistic that when research yields treatments, many more people will recover 9/

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@CureLongCovid

Julie Sullivan

2 months

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. 2/

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@CureLongCovid

Julie Sullivan

2 months

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

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@CureLongCovid

Julie Sullivan

9 days

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. 2/

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@CureLongCovid

Julie Sullivan

9 days

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

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@CureLongCovid

Julie Sullivan

2 months

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 4/

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@CureLongCovid

Julie Sullivan

9 days

@AHRQNews 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

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@CureLongCovid

Julie Sullivan

5 months

The program has evolved as our understanding of Long COVID has developed. We have over 4,000 patients in our program and continue to get 100 new referrals a month

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@CureLongCovid

Julie Sullivan

2 months

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

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@CureLongCovid

Julie Sullivan

5 months

Several coworkers died from Covid and several are disabled from Covid. I think we all have some PTSD from what we witnessed. I’m sure you all do as well. ♥️

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@CureLongCovid

Julie Sullivan

10 days

@pandapiler @kadamssl The symptoms are consistent with what we have seen previously and from other variants. Fatigue, PEM, brain fog, symptoms of dysautonomia

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@CureLongCovid

Julie Sullivan

5 months

It’s far from perfect, but we are well intentioned and are responsive to what patients living with Long Covid tell us they need. Happy to answer any questions you have about our program!

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@CureLongCovid

Julie Sullivan

5 months

Can this/should this be considered a form of encephalitis? They are across being treated as if it is a form of migraine andddd… you guessed it…. anxiety 😡

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@CureLongCovid

Julie Sullivan

2 months

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 10/

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@CureLongCovid

Julie Sullivan

2 months

Some hospitals and centers that call themselves a “long Covid program” offer few services, often it’s limited to rehab services (PT, OT, SLP) 3/

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@CureLongCovid

Julie Sullivan

5 months

Most patients in our program see 2-3 specialists. In addition to medical appointments, we have online support groups twice a month, expert lectures, a weekly newsletter and a repository of Long COVID resources. We connect patients with rehab programs and research/clinical trials

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@CureLongCovid

Julie Sullivan

9 days

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

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@CureLongCovid

Julie Sullivan

2 months

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 6/

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@CureLongCovid

Julie Sullivan

5 months

Brigham (BWH) expected that patients who had been hospitalized would need significant aftercare and starting expanding ambulatory services for post-Covid care. But as 2020 went on, it was clear that people who were NOT hospitalized were also not recovering 2/

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@CureLongCovid

Julie Sullivan

9 days

- 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 -

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@CureLongCovid

Julie Sullivan

2 months

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 7/

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@CureLongCovid

Julie Sullivan

9 days

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. 11/

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@CureLongCovid

Julie Sullivan

9 days

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 5/

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@CureLongCovid

Julie Sullivan

5 months

I was hired as the program manager/patient coordinator to be the “hub” of the wheel to complete intakes, schedule patients, direct referrals, supply resources and be a contact for post Covid patients. We were learning as we went. It was like trying to change the tires on a truck

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@CureLongCovid

Julie Sullivan

3 months

@Catinmyfamily Were you able to get treatment? Would they do antivirals in cases like this? If I recall, our patient took 5 days of Paxlovid but clearly it didn’t help 🫤

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@CureLongCovid

Julie Sullivan

5 months

The program was developed very intentionally. The thinking was that patients would see pulmonary first and then be referred to other subspecialties as needed. They identified specific providers in all of the subspecialties who would see post-Covid patients and would offer

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@CureLongCovid

Julie Sullivan

5 months

But there are BARRIERS 1. Clinic times are weekdays during work hours 2. Parking is expensive 3. Public transportation can be unreliable 4. We need more interpreters 5. It’s a BIG hospital and can be overwhelming

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@CureLongCovid

Julie Sullivan

5 months

I’m grateful that BWH built this program and prioritized the patient navigator role. It’s hard under the best of circumstances to try to seek help for a brand new illness and advocate for yourself, and you’re doing it while feeling crushingly ill. I am amazed every day at the

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@CureLongCovid

Julie Sullivan

3 months

@Sueb228 Thank you, Sue! I will share this information with her

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@CureLongCovid

Julie Sullivan

2 months

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. 11/

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@CureLongCovid

Julie Sullivan

5 months

Should a dexamethasone taper be considered? IV anti-virals? IVIG? What is being done to properly assess and treat this condition? #Medtwitter #longcovid #neuroinflammation 3/

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@CureLongCovid

Julie Sullivan

5 months

“Fatigue” is such an incomplete word for post viral MECFS. And post exertional “malaise” is even worse. What do you think would be a better term to encapsulate the syndrome? (Thank you @TripWorryf503 for bringing this up 😊)

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@CureLongCovid

Julie Sullivan

5 months

Demographics: the average age of patients in our program is 47. Gender breakdown is female 66%, male 43%, non-binary 1%. 70% have managed care plans, Medicare is 20%, Medicaid is 10%. It’s a pretty even split among viral variants

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@CureLongCovid

Julie Sullivan

9 days

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… 7/

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@CureLongCovid

Julie Sullivan

9 days

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 9/

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@CureLongCovid

Julie Sullivan

4 months

Please take a Covid test for every 👏🏼 single 👏🏼 “cold”👏🏼. Test before/after travel and events. Test if you plan to see someone who is immune compromised or high risk. Test if you were exposed to Covid. COVID continues to spread because people are not vaccinating against it,

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@CureLongCovid

Julie Sullivan

5 months

People often ask what my background is :) I am a speech language pathologist by training! I have been an SLP for 30 years. In addition to practicing, I taught courses at Northeastern and trained new clinicians. Then I moved into rehab management and did that for about 10 years. I

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@CureLongCovid

Julie Sullivan

9 days

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 6/

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@CureLongCovid

Julie Sullivan

5 months

And how do we get a Neuro immunologist to be interested/engaged in treating this 4/

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@CureLongCovid

Julie Sullivan

27 days

@meighanstone is speaking at #RecoverTLC advocating for treatments that are NOT supplements, exercise, brain games etc. Patients already are accessing these. The focus needs to be on root cause clinical trials 🙌🏼🩵

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@CureLongCovid

Julie Sullivan

5 months

During the pandemic I was the rehab manager of a large facility, over 150 beds. We lost a third of our patients to COVID. We didn’t have PPE, we couldn’t send them to the hospital bc the hospitals were overrun and if they were elderly and a DNR there wasn’t much recourse except

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@CureLongCovid

Julie Sullivan

6 months

I made an updated list of current Long COVID trials and their status for our group members. Feel free to share

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LONG COVID CLINICAL TRIALS.docx

LONG COVID CLINICAL TRIALS (7/24/24) TREATMENT Description Phase of study Lead institution Number of participants Anticipated results Links ANTIVIRALS Paxlovid (Nirmatrelvir/Ritonavir) Antiviral...

docs.google.com

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@CureLongCovid

Julie Sullivan

9 days

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 10/

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@CureLongCovid

Julie Sullivan

9 days

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

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@CureLongCovid

Julie Sullivan

9 days

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. 13/

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@CureLongCovid

Julie Sullivan

5 months

Our program is still housed in pulmonary, our pulmonologists are treating fatigue, PEM, exercise intolerance and beginning the diagnostic and education process for patients for dysautonomia. Autonomic neurology is a huge part of our program. Pain Medicine is routinely doing

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@CureLongCovid

Julie Sullivan

9 days

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

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@CureLongCovid

Julie Sullivan

9 days

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 😭 14/

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@CureLongCovid

Julie Sullivan

3 months

🧵🧵🧵I would like to share some resources on Long COVID for primary care providers on assessment, treatment and referral guidance for people living with Long COVID. There is a wealth of information out there and now that we are on year 5 of the pandemic, no excuse not to stay

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@CureLongCovid

Julie Sullivan

2 months

I said goodbye to my best friend and the love of my life yesterday. Mary was 15 and she was tired and she was ready. She passed peacefully in our arms and I will miss her every day for the rest of my life. Please give your creatures extra hugs, ear scrubbies and treats today in

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Julie Sullivan

26 days

Watching this remotely, without Long COVID or ME-CFS, has been exhausting. Once again, I am in awe of the strength and resilience of the Long COVID community participating and watching this conference and recognize the risk and toll this takes on your bodies. THANK YOU. 💙💙💙

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@CureLongCovid

Julie Sullivan

5 months

Health equity is a problem. Race demographics are: White 83%, LatinX 6%, Black 4%, Asian 3%, Other 4% We obtained a grant to help identify and break down barriers to care.

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@CureLongCovid

Julie Sullivan

7 days

We don’t have an end date or graduation or discharge from our program. As long as you have Long COVID, you are welcome to all of the offerings even if you are no longer seeing providers in our clinic. Classes, support groups, newsletter, research, webinars. 2/

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Julie Sullivan

1 month

🧵🧵🧵 I feel very grateful that I will be able to participate in a research study to advance understanding of post-infectious fatigue and PEM. The PI for this study is Dr. Michael VanElzakker, you may know him from the great work he’s doing with Polybio. 1/

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Julie Sullivan

19 days

Many thanks to @BostonGlobe for featuring Long COVID on the front page today and highlighting the crucial need for more research and treatment! #LongCOVID #BostonGlobe #BrighamandWomens #cuteLongCOVID

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Some Boston doctors are starting to unravel the mysteries of long COVID and find improved treatme...

There’s still no cure for the debilitating condition but some front-line clinicians are finding ways to help patients feel better.

www.bostonglobe.com

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Julie Sullivan

5 months

@CovidExists We have several sub-specialties that say straight out that they won’t see ME-CFS

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@CureLongCovid

Julie Sullivan

2 months

We do get large numbers of referrals directly from EDs and Urgent Care who recognize LC, put the pieces together and refer to us. But as you know, you roll the dice depending on the provider you encounter. More education is NEEDED. It’s still so inconsistent

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Julie Sullivan

5 months

The pull in method isn’t feasible, we are working on pushing out care to the community and providing resources to community health centers where people get their care and trust their providers

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Julie Sullivan

2 months

@ThosVarley YES. If there is some compelling risk, then tell us. Otherwise, whyyyy is not an option this year when it was fine last year?

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@CureLongCovid

Julie Sullivan

27 days

This session of people living with Long COVID should be required viewing for health care professionals #RecoverTLC

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Julie Sullivan

5 months

We had an amazing Neuropsychiatrist who treated brain fog. They have had to scale back that clinic due to the overwhelming needs in the Psychiatry department overall.

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Julie Sullivan

9 days

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. 15/

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Julie Sullivan

5 months

We refer a lot to the Osher Center for Integrative Medicine. They do a great job managing chronic illness and have stepped up big time in response to Long COVID

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Julie Sullivan

2 months

@amandatoryfigs That’s not cheeky. You’re absolutely right. It baffles me that masks aren’t mandated across hospitals

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@CureLongCovid

Julie Sullivan

5 months

We have received generous gifts from donors that have allowed us to offer Mind Body classes for patients and POTS specific PT (still working out contract details on this one)

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@CureLongCovid

Julie Sullivan

4 months

@theedifyingword Infuriating. I’ve had patients told by providers that POTS is “very trendy these days”. Hm. Trendy? OR RAMPANT DUE TO THE DANGEROUS NOVEL VIRUS OF THE LAST 5 YEARS

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@CureLongCovid

Julie Sullivan

9 days

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 16/

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@CureLongCovid

Julie Sullivan

9 days

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 19/

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Julie Sullivan

10 days

@CovidCaution @GayFabFourFan Doesn’t bother me one bit :)

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@CureLongCovid

Julie Sullivan

5 months

Tagging @bhanlon15 and @atranscendedman because they always do such a great job amplifying questions like to this to the Long Covid and MECFS communities 💕

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