Julie Sullivan
@CureLongCovid
Followers
2,803
Following
2,000
Media
41
Statuses
1,333
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
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
Telegram
• 1245361 Tweets
#خلصوا_صفقات_الهلال1
• 1227251 Tweets
Brazil
• 909926 Tweets
O Brasil
• 673758 Tweets
Elon Musk
• 664376 Tweets
Chelsea
• 514036 Tweets
Alexandre de Moraes
• 479925 Tweets
Osimhen
• 278244 Tweets
Sterling
• 200998 Tweets
Xandão
• 143250 Tweets
Napoli
• 134156 Tweets
Adeus Twitter
• 124643 Tweets
Ditadura
• 124505 Tweets
Threads
• 95139 Tweets
#مولد_ولي_العهد
• 86926 Tweets
Labor Day
• 65868 Tweets
Tchau
• 65537 Tweets
Anatel
• 63566 Tweets
Eddie
• 62083 Tweets
Nelson
• 53666 Tweets
Derrubaram o X
• 42526 Tweets
Bluesky
• 37982 Tweets
Tumblr
• 36343 Tweets
VPNs
• 35964 Tweets
Coreia do Norte
• 33429 Tweets
Benfica
• 32029 Tweets
CONGRATULATIONS RM
• 30461 Tweets
#الجناح_مطلب_اهلاوي
• 23809 Tweets
CONGRATULATIONS NAMJOON
• 22098 Tweets
Orkut
• 19059 Tweets
BARMY WITH BTS
• 15786 Tweets
Shelton
• 10363 Tweets
野菜の日
• 10349 Tweets
Pinned Tweet
Let’s rock and roll!
FDA Authorizes Updated Novavax COVID-19 Vaccine to Better Protect Against Currently Circulating Variants | FDA
2
3
21
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/
79
597
4K
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
56
278
2K
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/
7
81
1K
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/
5
94
1K
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/
4
64
1K
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/
1
72
1K
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/
10
88
1K
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!
27
249
1K
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/
2
62
1K
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/
2
69
1K
Have any of you had trouble getting a PCR test? This is bonkers
67
61
1K
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/
23
180
1K
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 🙏🏻💙
14
64
1K
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/
3
53
939
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/
25
166
766
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/
14
142
689
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 😷🩵
53
137
635
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” 🥵
12
40
379
@forlornprairie
WHY. I have told patients, thank goodness men get long covid, otherwise would we even care? 🤷🏼♀️
10
14
364
We need more telehealth options.
We need to decentralize research.
12/
9
9
198
WE SEE PEOPLE GET BETTER AND RECOVER.
We are all still very optimistic that when research yields treatments, many more people will recover
9/
3
6
198
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/
3
15
193
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
1
24
193
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/
3
16
172
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
2
17
169
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
3
21
167
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. ♥️
4
17
162
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!
6
11
160
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/
2
8
154
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 😡
11
12
153
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/
1
11
153
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
1
14
152
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/
1
12
150
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/
1
16
148
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/
2
7
139
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
2
12
132
@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 🫤
9
6
132
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
6
13
131
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
6
12
129
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
1
9
127
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/
3
6
124
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/
1
11
123
“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 😊)
43
17
124
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
3
14
121
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,
3
17
119
I made an updated list of current Long COVID trials and their status for our group members. Feel free to share
11
45
117
And how do we get a Neuro immunologist to be interested/engaged in treating this
4/
3
8
117
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
4
9
117
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
8
14
116
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
30
0
105
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
3
13
105
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.
1
11
104
@CovidExists
We have several sub-specialties that say straight out that they won’t see ME-CFS
8
5
100
🧵🧵🧵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
6
35
102
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
1
6
95
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.
3
17
91
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
4
7
90
@amandatoryfigs
That’s not cheeky. You’re absolutely right. It baffles me that masks aren’t mandated across hospitals
4
1
89
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)
12
6
88
@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
4
9
86
Tagging
@bhanlon15
and
@atranscendedman
because they always do such a great job amplifying questions like to this to the Long Covid and MECFS communities 💕
4
5
83
@miss_malingerer
Oh yes! They are amazing. Autonomic testing can help delineate what kind of dysautonomia you have and what is driving your specific symptoms and then they manage your care accordingly. It’s a subspecialty that definitely needs more providers
4
7
80
@Kenneth33071904
I’ve only had it once. One of my daughters still hasn’t had it. Most people I know have had it at least 3-4 times.
#maskingandvaccinationswork
1
2
72
You all had great recommendations and I shared them with the team.
I heard from them yesterday and they have incorporated your recommendations into the study plan and are submitting it for FDA approval!People are (finally) listening! 😭🙏🏻
4
3
73
A few weeks ago, I posted about meeting with a research team on a clinical trial for a medication to treat
moderate/severe fatigue and PEM. They asked on input on the needs of participants and we had a good conversation about how to include the target population.
1/
3
5
67
Those of you who experience internal tremors and vibrations with Long Covid, what has been helpful for you?
#LongCovid
#LongCovidAwareness
#MedTwitter
33
8
67
@Catinmyfamily
I’m so sorry. It’s such an awful illness. I hope answers and treatments emerge soon
3
2
65
Research study opportunity at Mass General Hospital:
ME/CFS and post-COVID ME/CFS- survey blood draw and MRI to study the underlying cause of cognitive control impairment in these conditions.
More info here:
5
31
65
🧵🧵🧵
Information about RECOVER AUTONOMIC
This clinical trial will enroll 380 participants. Sites are in the U.S but out of country participants are also welcome to enroll if they can travel to one of the sites
1/
10
30
60
@ChefMiew
I don’t know. Supposedly not? But if you have enough viral load to test positive how do they know you’re not still shedding the virus? 🤷🏼♀️
1
1
56
I disagree with this, our clinic of over 4,000 Long Covid patients has far more people who had the Delta and Omicron variants. And most (85%) were and are vaccinated. Not saying this to stoke on the anti-vaccine trolls. The only sure fire way to avoid long Covid is to not
I have a lot of comments. None that are fit for print. But thanks for checking in.
Vaccine injury is rare but real.
The majority of true
#LongCovid
sufferers got COVID *and*
#LongCovid
before the vaccines were available.
Bye.
6
2
33
3
10
54
@Kenneth33071904
I’m grateful that I have no lingering issues from it. I took Paxlovid and kicked it out within a few days.
As a Long Covid program director, one would think my friends would listen to me about keeping up with boosters, masking, testing when you feel sick and getting Paxlovid.
2
2
50
@AdamVanBavel
@pfizer
Wouldn’t that be great! It’s “fast tracked”, hopefully that means it will be out in 2024?
1
1
49
I want to hear from you about how art and creativity help you cope with chronic illness.
Do you paint, blog, write poetry, tell stories, sing, use music, draw?
26
12
49
Clinical trials for severe fatigue with PEM: What can researchers do to be more inclusive for people who are very ill or bed/homebound?
Some ideas:
-Tele-visits as much as possible in lieu of in-person visits
- Home visits for blood draws and dosing
What else?
12
10
49
@Jimmyjo0n465
There’s no defense, it’s a terrible policy. I hate it both for the physical risk to LC patients and the emotional stress it puts on them.
1
0
46
RECOVER VITAL has enrolled 800 of 900 participants!
- The Cognitive Disorder cluster has enrolled 300 and is now closed.
- The Exercise Intolerance cluster is near 300 and will soon close.
- The Autonomic Dysfunction cluster is still enrolling.
There are currently 68 active
6
14
45
@holleighz
It’s wild! I’m going to try to get more information about whyyyyy they won’t do them
6
2
43
4
0
43
Registration has opened for the RECOVER Treating Long COVID – Navigating the Pathway Forward (TLC) kick-off meeting on Sept 23-25. I see lots of familiar names already on the attendee list! :)
Register here:
Summary - RECOVER Treating Long COVID – Navigating the Pathway Forward
5
9
41
@HollyBlomberg
@Catinmyfamily
@dbdugger
We can’t even blame this on LabCorp, it was our hospital labs 🫨🫨 I’m definitely following
@dbdugger
and always appreciate his knowledge :)
0
2
41
@amyboylanwrites
@CounsellingSam
@BostonChildrens
Oh my goodness. If you have the contact person/people there can you DM me?
1
0
41
@ZacharyGrinDPT
The anxiety of Long Covid is visceral. It’s a cold deep dread and gloom that is different than our “normal” anxiety. It’s a brain taxed by being bathed in adrenaline and cortisol from being locked in fight or flight. It may not be inflammation, it may be Neuro chemical? All I
5
7
40
@mitd_greer
She tried. She was turned away by multiple labs in our system. She finally went to her local urgent care
2
1
40
@PutrinoLab
Twitter is a mess of bots and trolls and bizarre negativity for the sake of being negative.
You are doing groundbreaking research and and changing lives. Thank you thank you for all you do! 🙏🏻💙
0
2
39
Thank you 🙏🏻💙
For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable.
Congress must act now. Yes. It is time for a Long Covid Moonshot.
523
2K
8K
0
4
37
I thought it would be interesting to share some data about our referrals with regard to Covid infection dates. More evidence that Covid is far from over and people continue to develop long COVID with each variant
1/
2
4
36
I want to cry with gratitude that
@Cigna
will pay for Erdafitinib for my loved one with glioblastoma. It’s off label use and very expensive. He was scheduled for another resection this week and it was cancelled due to a thrombosis in his brain. This is his last hope treatment 🙏🏻.
2
0
36
I’m used to being the target of patients’ frustrations about long covid and the healthcare system but being yelled at because our hospital is observing Juneteenth is a fresh hell that I hadn’t anticipated.
#ImSoTired
7
1
35
