We heard you and we are here for you! We are now including all Northeast states in our online Meet Up group. It is free to attend, please join us!
form.jotform.com/260346468999...
#massmecfs #chronicfatigue #fibromyalgia #chronicillness #longcovid #invisibleillness #pots
I hope the results of this study do not deter cardiologists from prescribing ivabradine. For some of us, it was the key to a more stable life
#MECFS #POTS #IST #SVT
📄Dossier complet : urlr.me/Gx36Qw
#LongCovidAwareness #Apresj20 #LongCovid #SantéPublique #Cardiologie #POTS #Dysautonomie #HandicapInvisible @secardiologia.bsky.social @lcawarenessint.bsky.social @info.gouv.fr
⬆️Comparer avec la position debout
Si possible :
• Mesurer la fréquence cardiaque debout
👉 Une augmentation importante peut évoquer un #POTS, fréquent dans le Covid long.
DANS LE COVID LONG, LES ATTEINTES CARDIOVASCULAIRES NE SONT PAS TOUJOURS VISIBLES. MAIS ELLES AFFECTENT PROFONDÉMENT LA CIRCULATION, L'ÉNERGIE ET LA VIE QUOTIDIENNE. RECONNAÎTRE LE POTS, C'EST MIEUX COMPRENDRE LE COVID LONG. #LONGCOVIDAWARENESS #LONGCOVIDHEARTBEATS ApresJ20
#longcovidawareness #longcovidheartbeats
#LongCovid #POTS #Dysautonomie #Apresj20 @lcawarenessint.bsky.social
LE COVID LONG PEUT ENTRAÎNER UN POTS. En position debout, la circulation sanguine s'adapte mal. Le cœur accélère pour compenser. Dans le POTS, la fréquence cardiaque augmente d'au moins 30 battements par minute en se levant, en l'absence de chute de tension artérielle. #LongCovidAwareness #LongCovidHeartBeats #ApresJ20
📉 Chez de nombreuses personnes, cela se manifeste par un #POTS.
En position debout, la fréquence cardiaque augmente fortement, souvent de +30 bpm ou plus, car le corps tente de compenser une mauvaise circulation.
CLINICAL TRIAL: Treatment of PoTS (Postural orthostatic tachycardia syndrome) in Long Covid with ivabradine.
www.pharmacytimes.com/view/heart-rate-vs-quali...
#MECFS #pwME #POTS #LongCovid #PostCovidSyndrome
Just in case you’re wondering how bad and easily my muscles cramp now:
My spouse was gently rubbing my legs cause they hurt, forgot he can‘t press hard on them, gently grabbed my calf muscle and my whole left leg went into spasm and my foot started to claw.
#mecfs #longcovid #pots #mcas
If you're complicated it is that much more important to know how to find the right acupuncturist for your needs.
#BlogPost #Acupuncture #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare
💕 #Wellness
Cinquena sessió de POTS fer Història. Inclou l'accés a un nou episodi de POTScast-POTS fer Història.
👇
potscv.blogspot.com/2026/03/cinq...
#SiVolsPots #SiVolsPotsCV #POTSferHISTÒRIA #POTS10ANYS #POTSCV #POTS #POTScast
and large randomized clinical trials are lacking.
- Intravenous Immunoglobulin (IVIG) IVIG is intended to modulate autoimmunity and inflammation that may contribute to LC-associated #POTS . The rationale is based on evidence that
www.sciencedirect.com/science/arti...
This trial addresses a critical gap in #LongCOVID management by providing the largest source of evidence to guide medical care for #POTS in Long COVID patients.
#Medsky🧪 #iDsky #immunosky #Publichealth This trial addresses a critical gap in #LongCOVID management by providing the largest source of evidence to guide medical care for #POTS in LC patients
- Specific Interventions & Their Rationale
N
screenshot of abstract
UK research funded by ME Association
Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long COVID
Free:
www.mdpi.com/2077-0383/15...
#MEcfs #LongCovid #PwME #ME #MyalgicE #POTS
8 months post endometriosis excision & hysterectomy. Diagnosed with hEDS, POTS & fibromyalgia after years of being unheard.
Still grieving my old body, still learning my limits.
Chronic illness = daily battle.
Be kind. You never know what someone is facing.
#endometriosis #heds #pots #Fibromyalgia
For those of us who can't safely participate in No Kings march because of our health, there is an online event.
www.standupforscience.net/sufs-nk3
#MyalgicEncephalomyelitis
#disability
#Longcovid
#POTS
My #chilli #plants have been growing well & so I decided it was time for them to have their own space & prevent overcrowding. They will need to be transplanted into bigger #pots over the coming months, with a couple staying indoors & the others going outside once the risk of frosts have passed.
Super excited to see that the three pots I planted with sprouting baby potatoes are showing signs of growing as they break through the surface & little leaves are beginning to show.
#potato #potatoes #leaves #leaf #sprouting #compost #pots #garden #vegetable
well i was right last week about asking my dad to do my hair. i just tried washing it sink the sink, exactly like last week, and feel so much worse than then. it's the holding my arms above my head, and feet on the ground. #pwME #POTS
screenshot of a tweet by @holo_cene that reads "covid is a feminist issue. women are twice as likely to develop long covid and predominantly occupy the jobs with the most covid exposure: teaching, retail, childcare, etc. Why aren't feminist orgs talking about this?"
Would love to see @rebeccasolnit.bsky.social talk to @binitakane.bsky.social @mayadusenbery.bsky.social @meactnet.bsky.social about #LongCovid #ME #POTS #IACC and why #GreatestMEdicalScandal is a feminist issue 🙏🏻
Getting my March IVIG.. couldn't afford this monthly without TX Oncology finding ways to cover this cost. Apparently it's $3513 per month with insurance. I will be here for 3 hours getting this infusion.
#POTS
#ChronicIllness
#NEISVoid
Yes, guys have EDS too.
#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness
Another day of no sleep.
I honestly wonder how much longer my body will be able to hold on after years of this.
#longcovid #mecfs #pots #mcas
Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.
Goodbye clopi, hello Ticagrelor.
Hoping for benefits,minimal side effects & nothing scary! 🙏
#LongCovid #POTS #MCAS #Migraine #TeamClots
Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.
Goodbye clopi, hello Ticagrelor.
Hoping for benefits,minimal side effects & nothing scary! 🙏
#LongCovid #POTS #MCAS #Migraine #TeamClots
Update: i have a plan for pain managent now! Suuuuper excited for this next step in my healing journey! #fnd #POTS #chronicillness #chronicpain #disabled #health #invisibleillness #bekind
I feel a tad called out!!!
#ChronicIllness #SpéirGorm #SpéirGhorm #SpeirGorm #BrainFog #EDS #Pots #MCAS #Illness #Disability #Ireland #ChronicIllnessHumour
A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.
EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors
buff.ly/9sZKVdD
#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky
