Hopkins ME/CFS & Related Disorder Program

Our goal is to provide outstanding clinical care to patients with ME/CFS & related disorders and improve our understanding of these illnesses through research.

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Dr. Rowe made the Cover of the Hopkins Children's magazine!!!! Learn more about our clinic's leader history and mission.
https://t.co/co7ZeaZemD

[Alba Azola, MD @AzolaAlba]

Five years ago, she got COVID.
By November 2021, she came to our clinic with disabling #LongCOVID symptoms.

Today, for the first time in years, she told me she feels closer to her pre-COVID baseline. Closer to herself again. 🧵

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

It was such a treat to have @ImmunoFever at the clinic today 🤩 Thank you for visiting and sharing your expertise with us—we truly appreciate the insight and care you brought to our patient.

[Carmen Scheibenbogen @C_Scheibenbogen]

Eine weitere Neuroimaging-Studie bei ME/CFS, die erstmals direkte strukturelle Hinweise für Neuroinflammation zeigt, die mit Krankheitsschwere korrelieren. Das passt zu den aktuellen TSPO-PET-, MRS- und fMRI-Studien, die auf Neuroinflammation, Neurotransmitterstörungen und veränderte Netzwerke hinweisen. Mehr dazu auf unserer Berlin Konferenz am 7.5.

https://t.co/rP8bbEmv1g

[Alba Azola, MD @AzolaAlba]

“That’s not my silo.”
One line that explains why Long COVID care is so hard.
A multisystem disease inside a siloed healthcare systemoften end up coordinating their own care—while living with fatigue, brain fog, and PEM.
We must do better.
#LongCOVIDAwarenessDay

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

As we approach Long COVID Awareness Day (March 15), we need to talk about more than the illness—we need to talk about the system patients are navigating while sick.
In our recent qualitative study (https://t.co/Bh1mhAmmME),
people living with Long COVID described a healthcare journey marked by siloed specialty care, poor communication between providers, long wait times, and major barriers to diagnosis. Many heard some version of: “That’s not my silo.”
But Long COVID is a multisystem condition, and patients cannot divide their symptoms by specialty.
When coordination fails, patients become their own care managers—tracking records, connecting doctors, scheduling visits, and advocating for themselves while living with fatigue, brain fog, and post-exertional worsening.

Long COVID is exposing deeper structural gaps in how we care for multisystem chronic disease. Awareness must lead to better coordination, clearer pathways to care, and systems designed around patients—not silos.
#LongCOVIDAwarenessDay #LongCOVID #PatientAdvocacy #HealthcareSystems #MECFS

[The Lancet @TheLancet]

On the cover of The Lancet:
Editorial — “Robert F Kennedy Jr: 1 year of failure”

Read the latest issue: https://t.co/x0Mv0owHDx

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Long COVID has revealed deep cracks in the culture of modern medicine.
Our systems reward speed, certainty, and narrow expertise — yet chronic, post-infectious illnesses demand time, coordination, and humility. When those are absent, patients are too often dismissed or fragmented across care.
This article thoughtfully examines why the current culture of medicine is failing people with Long COVID — and why change is urgently needed.
🔗 https://t.co/brqK0lwSX9
#LongCOVID #ChronicIllness #HealthcareLeadership #PatientCenteredCare

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Hot off the press! A Continuous Oral Regimen of High-Dose Cromolyn Sodium Is Effective for Some Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients With Mast Cell Activation Syndrome https://t.co/DfC2KQ7Gx3

[Barack Obama @BarackObama]

Dr. Martin Luther King, Jr. dedicated his life fighting for equity and justice. He taught us that even in the face of intimidation and discrimination, we must never stop working towards a better future – a lesson that feels especially relevant today.

Change has never been easy. It takes persistence and determination, and requires all of us to speak out and stand up for what we believe in. As we honor Dr. King today, let’s draw strength from his example, and do our part to build on his legacy.

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Excited to share this gem! Learn about the clinical evaluation and management of people living with MECFS from the source!

[Solve ME/CFS Initiative @PlzSolveCFS]

In "What’s New in ME/CFS?" Dr. Peter Rowe says the clinical toolbox for #MECFS is expanding. He shares:

-How targeted questions during a physical exam can reveal treatable structural problems
-What gives him hope

Watch: https://t.co/JasjAE9sM8

#MEAwarenessHour

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Hot off the press!
"Putting the PASC Score to the Test: Clinical vs. Statistical Accuracy in Long COVID Diagnosis"
🧠 Our new study validates the NIH RECOVER PASC Score in our Long COVID clinic colort:
- specificity & PPV = 100%
- sensitivity ~80%—meaning ~1 in 5 LC patients may be missed.
A symptom-triad (altered smell/taste + PEM + reduced sexual desire/ability) performed best (94% sensitivity, 92% specificity). A call for refining diagnostic tools + using clinical judgment to capture patients who “score negative” but clearly have LC.
🔗 https://t.co/TAqW6ZZQt3

#LongCOVID #PASC #PEM #PostViral

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Hot of the press!
🧠 Autonomic symptoms are common in post-treatment #LymeDisease.
In 210 patients, 4% showed orthostatic tachycardia on a 10-min stand test—more often early in disease & after steroid/antibiotic exposure.
Findings highlight overlaps with #POTS and need for autonomic evaluation.

https://t.co/RlGm9eN67n

[Renegade Research @RenegadeRes]

1/16 This is a thread with 14 polls about responses in patients with ME/CFS (from any trigger, including COVID-19) to anesthesia / sedation / numbing (including dental).

Please ONLY fill this one out if you meet the Canadian Consensus Criteria for ME/CFS.

We appreciate people taking the time to complete all of the polls. Your answers could inform future research and clinical care.

There are separate threads for people who have hypermobile connective tissue disorders WITHOUT meeting the criteria for ME/CFS and for people who don’t have either.

You can fill out this survey if you have BOTH ME/CFS and a hypermobile connective tissue disorder, though.

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

@NovaSupport @AzolaAlba Absolutely 👍

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

https://t.co/0HgtiV0oUo

[Mark Cuban @mcuban]

I went off on the healthcare system. Let me know if you agree or disagree

[Barack Obama @BarackObama]

Congratulations to new Nobel Peace Prize laureate María Corina Machado for her courageous struggle to bring democracy to Venezuela. It should inspire those engaged in similar struggles around the world - and remind those of us lucky enough to live in America that we have a solemn responsibility to constantly preserve and defend our own hard-won democratic traditions.

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

Wishing Dr. Peter Rowe a Happy 70th Birthday!!!!

[Hopkins ME/CFS & Related Disorder Program @HopkinsMECFSC]

🌟Join Us for Rowe’s Research Runners 2025! 🌟
It’s RRR time! 🎉 Walk, run, or roll on Oct 19 to fund ME/CFS, dysautonomia & Long COVID care. Every $ helps our clinic thrive. Order your Shirts by 9/28! 💙 Sign up: https://t.co/ThF8l4kHWj