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
Update on the heart thing. Yea turns out I just have POTS and my body over reacted making me think I was having a heart attack
#POTS
lol i literally got a high HR alert from … putting on one (1) compression sock #POTS
After I get IV saline I get a primal hunger that I don’t normally have.
Like that true, pure really hungry feeling that I haven’t got since getting sick.
Its great. It only lasts about an hour, but I’ll take what I can get.
#longcovid #mecfs #pots #mcas
Regulation is not having a perfect, stress-free life.
It’s those tiny moments where your body stops clenching & bracing & remembers: “okay… I’m here &
I’m safe.”
Activation—>return to calm.
#nervoussystemregulation
#mindfulness #POTS #stressrelief
Nevra is currently very unwell and has not been able to use her phone for the past 5 days. She has been dealing with severe faecal impaction for 4 days, and we are awaiting guidance from her doctor. She is experiencing extreme reactions to mould, chemicals, and poor air quality, especially due to hotel renovations and recent thunderstorms due to climate change brought upon by w*rs in her region. March goals: 1. $1343 USD/£1002 for rent 2. $68 USD/£50 for mould fogging machine 3. £2500 USD/£1871 for vascular compression Or 4. $267/£200 for food/meds/IV 3) $667 USD/£500 to pay back surgery loans Rent and deposit donation link: PayPal.me/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
Save Nevra - March update Nevra is struggling to breathe both indoors and outdoors and is relying heavily on a nebuliser (which may also need a new filter). Her current environment is unsafe... there is visible mould above her bed, but moving to the couch causes significant pain. She has likely not slept for 2 days, is in severe pain, and has lost more weight. She currently has no access to IV support. Nevra can only receive messages through her mother's phone at the moment. Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
We are monitoring Nevra's emails closely for doctor responses and may need to adjust appointments and care urgently. She misses everyone deeply Urgently need: Nevra is trying to secure a mould-free apartment but needs funds for the deposit. This is critical for her survival and stability. Please continue sharing and supporting her fundraiser if you can. Please share, comment, like & donate if you can to keep her housed and alive! Rent and deposit donation link: PayPal.com/paypalme/SaveLizNevra GoFundMe link for food & healthcare costs: GoFundMe.com/f/save-nevra
🧡💛 Save Nevra - March Update 💛🧡
Please donate and share this post!
Rent and deposit donation link:
PayPal.me/SaveLizNevra
GoFundMe link for food & healthcare costs:
GoFundMe.com/f/save-nevra
#SaveLizNevra #MECFS #SevereME #POTS MillionsMissing
#MCAS #POTS #Mito people: my body keeps rejecting sources of (dairy-free lactose-free gluten-free) protein and calcium as so many of them have histamine, and in general my body just doesn’t like metabolizing some things
Give me your best high absorption options, please thank you
Особливості вирощування саджанців Щучника дернистого | Deschampsia “Palava” вже в LinkedIn: www.linkedin.com/posts/diva-n...
#щучниквсаду
#divanursery #keepuniqueness
#outdoorplantcollection #linkedin #deschampsia #щучник #gardening #growing #pots #roots #container #nativeplants #розсадникDiva
#FirstDoNoHarm #ChronicAllies #CdnEd #Dysautonomia #POTS #MECFS #LongCovidKids #Physio #EducationCanada #InclusiveEducation #SchoolSupport #TeacherPD #TeacherTips
based upon weather conditions, so that is the level of symptom prognostication we want to target for things like #LongCOVID, #MECFS and #POTS. We believe it is achievable (especially for POTS!) because so many people with lived experience have shared with us how much their
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