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Rowe's Research Runners

@rowesresearchrunners

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The mission of RRR is to fundraise & increase awareness for ME/CFS, dysautonomia, & related illnesses, now including Long COVID.

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I'm fundraising and virtually walking (or lying in bed, depending on the severity of my symptoms) for the outstanding team at the Chronic Fatigue and Related Disorders Clinic for the 10th Anniversary of the Walk, Run, Roll. Dr. Rowe has semi-retired and my care is now in the hands of the wonderful Sarah Frank, DNP!

The team are experts on dysautonomia, which is any illness that affects the Autonomic Nervous System, including POTS (Postural Orthostatic Tachycardia Syndrome), in addition to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Mast Cell Activation Syndrome, Connective Tissue Disorder, and related illnesses, now including Long COVID. These are serious neurological diseases that cause many debilitating symptoms and need much more funding. We currently don't have any FDA treatments and have to use medications off-label to treat a myriad of symptoms.

I have been disabled by these illnesses and I'm unable to work due to the severity of my symptoms or go to college. I hope to be able to do more in the future with the help of the clinic.

Your unwavering support to me over these past 23 years has been truly remarkable, as well as your support of Rowe's Research Runners.

Any amount you could contribute is greatly appreciated and will go directly to the clinic. If you can't donate, I completely understand.
The link to donate is in my bio and will be in the highlights as well!

[Image Description: A white woman with long brown hair wearing rhinestone sunglasses is smiling. The background is a shopping center with trees around. Her long sleeve blue shirt says Rowe's Research Runners 2022.]

#MECFS #POTS #Dysautonomia #MCAS #CCI A white woman with long brown hair wearing rhinestone sunglasses smiling. The background is a shopping center with trees around. Her long sleeve blue shirt says Rowe's Research Runners 2022.

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Thank you for being here! 🫶

@happyvalleypa
#facepaint #schedule #smallbusiness #pennstate #autumn

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August 8th is Severe ME Awareness Day. ME aka ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a chronic illness I've lived with since I was 10 years old (I've been chronically ill for 23 years). I was not diagnosed until I was 17 even though I was diagnosed with POTS at 12. ME/CFS currently has no FDA treatments or a cure.
I love to sing and perform, but these illnesses make it extremely difficult. I wanted to study musical theatre and my dream was to be on Broadway and to also be a singer. I'm grateful I can still when I'm able and post it online for everyone.

I wanted to sing "This is Me" from The Greatest Showman to raise awareness. No copyright infringement intended.
Please follow @meactnet @openmedf & @rowesresearchrunners for more info on ME/CFS.

#SevereMEDay #MECFSAwareness #Singer #ChronicallyIll #SevereME

Songwriters: Benj Pasek / Justin Paul

This Is Me lyrics © Kobalt Music Publishing Ltd., O/B/O DistroKid, Walt Disney Music Company

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Thoracic Outlet Syndrome, overlapping conditions, and her personal victory story - all shared in Maritsa’s conference talk. Video is now live! Check it out at www.youtube.com/@dysunderstood or head to our conference page on the website to watch the full video! #Dysunderstood #TOS #DysunderstoodConference

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Support MECFS & LongCovid Research, particularly @openmedf @bateman_horne_center @solve_cfs @renegaderesearch @patientled

Shout out to @thesicktimes @rthm_health @meresearchuk @sam_rhode @wecrunchme for great research reporting. And always love for @meactnet

Here’s my end of the year sample of some #PedroPascalPapers I did in 2025. They’re fun to make, but cognitively taxing synthesizing a full paper into a couple sentences. Unfortunately, I haven’t been able to do that in a while.

Hopefully the New Year brings lots more research, treatments, and fun ways to raise ME awareness.

Twelve Days of #PedroPascal @pascalispunk

#MECFS #LongCovid #Research #PostExertionalMalaise Christmas holiday decor
Text: 12 days of PedroPascalPapers
Merry myalgic Encephalomyelitis & long covid research to you

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Today was the day! @rowesresearchrunners - Run walk Roll. We couldn’t make it the actual event, and I’ve been crashing through the weekends this season- but we walked a mile in our neighborhood. A very slow mile - which seemed appropriate given the cause. We picked up leaves and wild flowers, visited the home of our local groundhog friend, met puppy friends along the way, and allowed for much nature exploring.

This walk reflected the way my life has slowed down so much since getting Long Covid back in December 2020. And while I miss my runs along this exact path (and many others) - there is something to be said for slowing down and taking time to appreciate where we live.

Everything in its own time. For now it is my time to slow down, to rest, to heal.

Thank you to everyone who donated. If you’d like to donate - there is still time!

Thank you Dr Alba Azola for sticking with me on this rollercoaster ride that is chronic illness/long COVID.
There is very little more valuable - as a chronic illness patient - than a provider who believes you, works with you and doesn’t give up!

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✨ October 19–25 is Invisible Disabilities Week ✨

Not every disability can be seen. Many children, teens, and adults live with invisible disabilities like ADHD, Autism, Dyslexia, Epilepsy, Crohn’s Disease, Anxiety, PTSD, and chronic pain. These experiences are real — even when others can’t see them.

As an AuDHD (Autistic + ADHD) neurodiversity-affirming therapist, I support children and families navigating these challenges. In my playroom, kids are given a safe, supportive space to process big feelings, build coping skills, and know they are seen, valued, and accepted. 💛

Beyond my practice, I co-founded Dis No More Abilities (DDA) with Georgina Warren, Pacey B., and Hafsa Salahuddin — a movement to challenge ableism, celebrate disabled identity, and create spaces where invisible disabilities are recognized and respected. 🌍💜

💬 About Georgina:
Georgina is an Autistic author and advocate whose book “Tales of Virtuous Stepmothers” challenges Disney’s portrayal of stepmothers as villains, inspired by her own stepmother’s kindness, compassion, and strength.

💬 About Pacey:
Pacey has lived with invisible chronic illnesses for over 22 years, including ME/CFS, POTS, MCAS, CCI, and HSD. Because POTS is a form of Dysautonomia, October also marks Dysautonomia Awareness Month. Since 2017, she’s fundraised for Dr. Peter Rowe at Johns Hopkins Children’s Center through Rowe’s Research Runners, advocating for chronic-illness awareness and research. 💙

💬 About Hafsa:
Hafsa is the founder and executive director of the 7Q Foundation, a nonprofit serving children and adults with disabilities, special needs, and other differing abilities throughout the DMV.

💡 Disability doesn’t have to be visible to be valid.
💡 Compassion matters more than assumptions.
💡 Advocacy starts with awareness.

#InvisibleDisabilitiesWeek #DysautonomiaAwarenessMonth #DisNoMoreAbilities #NeurodiversityAffirming #AuDHD #InvisibleDisability #ChronicIllnessAwareness #PlayTherapy #Neurodivergent #AutismAcceptance #ADHDAwareness #MEcfs #POTS #MCAS #HSD #CCI #DisabilityAdvocacy

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It's #DysautonomiaAwarenessMonth and next week is #InvisibleDisabilitiesWeek💙
Here's a throwback to me virtually walking for the 6th Annual Walk, Run, Roll through Rowe's Research Runners, a third-party organization of Johns Hopkins that raises funds and awareness for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Dysautonomia, Long COVID, and related disorders for Dr. Peter Rowe and his team at the Chronic Fatigue Syndrome and related Disorders Clinic. I've been a volunteer with Rowe's Research Runners since its inception in 2017 and have fundraised every year. I also created the Instagram account and helped run social media overall. I've been chronically ill for 22 years and I'm beyond grateful for Dr. Rowe.
The 9th Annual event takes place this Sunday, October 19th in PA, but you can participate wherever you are. Thank you so much to those who have supported my fundraising efforts this year! It's greatly appreciated! 💙
Check us out @rowesresearchrunners

Hashtags below:
#RowesResearchRunners #OnwardAndUpward #ChronicIllness #Dysautonomia #ButYouDontLookSick #Spoonie #SpoonieLife #ChronicallyIll #ChronicIllnessCommunity #MECFS #POTS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SpoonieCommunity #InvisibleIllness #InvisibleIllnessAwareness #ChronicIllnessAwareness #Spoonies #SpoonieStyle #DisabilityAdvocate #ChronicIllnessWarrior #MCAS #HSD #ConnectiveTissueDisorder #CCI #DisNoMoreAbilities #PaceYourself

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October is Dysautonomia Awareness Month. I have a form of Dysautonomia called POTS (Postural Orthostatic Tachycardia Syndrome), in addition to my other chronic and invisible illnesses. Dysautonomia refers to a group of medical conditions caused by problems with the autonomic nervous system (ANS). The ANS controls involuntary bodily functions like breathing, heartbeat, and digestion. When it doesn’t work as it should, it can cause heart and blood pressure problems, trouble breathing, and other related symptoms. Singing causes lightheadedness, shortness of breath, and other symptoms, but I'm truly grateful to be able to share with all of you here! I may not be able to perform like I used to because of my illnesses disabling me, but I can sing on my own time and at my own pace! Thank you for always supporting me. I continue to advocate and volunteer for @rowesresearchrunners with Emily, Jessica, Amy, Corie, and others to raise awareness for these chronic illnesses.

Onward and upward,
Pacey💙

Image Description is in the comments section and hashtags are below:
#Dysautonomia #DysautonomiaAwarenessMonth #DysautonomiaAwareness #ChronicIllness #ChronicIllnessAwareness #ChronicIllnessCommunity #POTS #POTSAwareness #PosturalOrthostaticTachycardiaSyndrome #InvisibleIllness #InvisibleIllnessAwareness #MECFS #MyalgicEncephalomyelitis #CFS #DisabledSinger #ChronicallyIllSinger #DCCreative #MCAS #CCI #CranioCervicalInstability #ConnectiveTissueDisorder #HypermobilitySpectrumDisorder #Advocate #Advocacy #SpoonieCommunity #SpoonieLife #SingingAccapella #PaceYourself #GoAtYourOwnPace #DisNoMoreAbilities

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Cerebral (brain) Blood flow in #MEcfs
This is what makes @wearlumia so exciting- being able to easily measure & track the blood flow to the head.

#PedroPascalPapers @pascalispunk as charming as ever

Mapping cerebral blood flow in Myalgic Encephalomyelitis and Orthostatic
Intolerance J. Transl Med 2025
Meta analysis: There is reduced cerebral blood flow
(CBF) in Myalgic Encephalomyelitis (ME) &
Orthostatic Intolerance (Ol) separately. ME patients may or may not have changes in heart rate or blood pressure with reduced CBF.
Patients with both ME & Ol together have significantly greater CBF reduction. Tracking CBF in ME in those with & without Ol may be important in monitoring disease severity & predicting PEM events.
Note: Some articles observed increases in CBF in ME, this is likely due to supine testing.

Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia
PubMed ID: 32140630, 2020
Cerebral blood flow measurements, using Doppler imaging of the internal carotid and vertebral arteries during tilt testing show 90% of ME/CFS patients have abnormal cerebral blood flow with or without drop in blood pressure or rise in heart rate. @rowesresearchrunners

#OrthostaticIntolerance #POTS #MyalgicEncephalomyelitis #pwME #MEdEd #MEResearch #LongCovid #PEM #PedroPascal Pedro pascal matched to research

Mapping cerebral blood flow in Myalgic Encephalomyelitis and Orthostatic
Intolerance J. Transl Med 2025
Meta analysis: There is reduced cerebral blood flow
(CBF) in Myalgic Encephalomyelitis (ME) &
Orthostatic Intolerance (Ol) separately. ME patients may or may not have changes in heart rate or blood pressure with reduced CBF.
Patients with both ME & Ol together have significantly greater CBF reduction. Tracking CBF in ME in those with & without Ol may be important in monitoring disease severity & predicting PEM events.
Note: Some articles observed increases in CBF in ME, this is likely due to supine testing.

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Next up: new #PedroPascalPapers

I’m going to try to do some LC MECFS #ScienceFridays with @pascalispunk

Girls be like “I needed that” and it’s just pictures of #PedroPascal

#MyalgicEncephalomyelitis #LongCovid #MillionsMissing #LongCovidResearch #MedEd #GirlsJustWannaHaveFun #GirlsBeLike Collage of Pedro Pascal matched to research infographics
“Girls be like ‘I needed that’ and it’s just pictures of Pedro Pascal”

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#MontyPython #HolyGrail

Dysautonomia convincing PEM (with delayed onset regulations) it is time to take me out.

Me: “I feel fine… I think I’ll go for walk”
Dysautonomia: “you’re not fooling anyone” “you’ll be stone de@d in a moment”

#PEM always with an incalculable delay, completely knocking me out to go on the #SevereME cart.

Post Exertional Malaise is the worsening or new symptoms often delayed 12-72 hours after cognitive, physical, emotional, or sensory exertion with demonstrated neuro immune and metabolic changes. It is the key feature characteristic (only found in) of Myalgic Encephalomyelitis. @meactnet @bateman_horne_center

At least 90% of #pwME have drops in blood flow to the brain with or without changes in heart rate & blood pressure when upright (@rowesresearchrunners) #dysautonomia

About 50% of pw #LongCovid end up with ME

Video description: Plague cart scene from Monty Python & the Holy Grail. Two men discussing whether the old (alive!) man one of them is carrying can go on the cart. Later, King Arthur in pristine clothing prances by on …coconuts.

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