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) 💕
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.
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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
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.
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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 🤔
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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.
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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.
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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.
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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!
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
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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
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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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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 🙏🏻💙
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
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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
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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/
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 😷🩵
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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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
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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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
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
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. ♥️
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!
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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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 😡
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
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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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
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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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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
@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 🫤
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
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
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
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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“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 😊)
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
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,
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
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
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
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
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.
🧵🧵🧵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
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
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.
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
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)
@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
Tagging
@bhanlon15
and
@atranscendedman
because they always do such a great job amplifying questions like to this to the Long Covid and MECFS communities 💕
@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
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! 😭🙏🏻
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.
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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:
🧵🧵🧵
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
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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.
@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.
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?
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?
@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.
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
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
@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
@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! 🙏🏻💙
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.
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
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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 🙏🏻.
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