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@mayabee24

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LongCovid #SevereME POTS MCAS FUNCAP <1
#PedroPascalPapers to make research more interesting 🍉
🔗⬇️ Greatest MEdical Scandal References

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In Gaza, the basic necessities of life are no longer a given 💔— they have become a luxury that is extremely difficult to afford. Food, healthcare, education, water, and electricity have become incredibly expensive amid extremely difficult circumstances. Even electricity can cost around $20 per kilowatt-hour, while the prices of food, medicine, and other essential needs are far beyond what many families can afford.😔

As winter approaches, the suffering and need are becoming even greater. Families urgently need blankets, warm clothing, heating supplies, and safe shelter to protect themselves from the cold.😮‍💨

Any donation, no matter how small, can mean a meal, medicine, a warm blanket for a family, or an opportunity for a child to continue their education. ❤️🍉

The donation link is attached in bio. Your contribution can make a real difference.🇵🇸💔💔🇵🇸🇵🇸🍉
#freedom #gazaunderattack #fundraiser #palestine🇵🇸

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Hello my friends, I'm back after a long absence. I hope you are all well. I missed you all so much.🤍🤍👋
#gazaunderattack #palestine🇵🇸

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Today is Severe M.E. Awareness day. A day that makes me feel such heavy grief, not only for what my life could have been like if I hadn’t got sick at 14, but for the millions of people who suffer around the world from this utterly devastating illness.

I had severe M.E. for several years as a teenager, and it put my entire life to a stop. I left school, and lay in bed for years, as friends went to college, and then uni, and went on to live their lives. I was completely bedbound, had a stairlift in the house, a commode next to my bed, and I was barely existing.

That’s the reality of Severe M.E.

It takes every single thing from you, and when you try and try to get better, the symptoms get worse and worse.

It is hell.

August 8th, marks the birthday of Sophia Mirza. She was the first person in the UK to have Myalgic Encephalomyelitis (ME) officially recorded as the cause of death.

Today honours those living with severe M.E. whom are living with disabling fatigue and a mariad of symptoms.
Most are housebound, bedbound, and often living in complete darkness and silence, as they cannot even tolerate light or sound.

I hope this video helps raise a little more awareness, and I want to say a huge thank you to the incredible people in this video for trusting me with your footage 💕

Please watch. Please share. This is ours - and so many others’ - reality.
These stories deserve to be seen.

💕 Thank you to @franhaddock_ & @amykatherrrine for their help with this video

[ VD : A video of Alice’s followers showing them before and after they got sick with M.E. with each persons name on screen, and some information about the illness. ] 💙

Tags of the wonderful people featured in the video part 1 (continued in comments)
Fran @franhaddock_
Amy @amykatherrrine
Armond @armond.needs.rest
Lizzie @slaywithsparkle
Elicia @its.me.elicia
Megan @mindlesslymegan
Mihaela @bloomanddot
Kayli @wandering
Lindsay @spoonfuloflindsay
Chloe
@chloeschronicles_of_illness
Emily @thatgirlwithlongcovid_
Quella @quella_the_dizzy_octopus
Fen @kutlongcovid
Katie @katiecupcakelifewithme

#MyalgicEncephalomyelitis #MECFS #ChronicIllness #InvisibleIllnessAwareness #

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🚨 Big news: @solve_cfs has awarded @renegaderesearch a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID.

Here's what it means for patients 🧵

SIGNAL tackles 3 things our community needs:

1️⃣ Real-world evidence - determine which devices actually help
2️⃣ Access - "try before you buy"
3️⃣ Speed - findings shared with patients fast, not buried in papers years later

How it works:

1️⃣ Patients diagnosed with ME/CFS or Long COVID borrow devices, shipped free, for 3 months.
2️⃣ While borrowing, they contribute data through the @braininflammationcollab / @solve_cfs unhide® Solve Together platform.

Every loan = a real-world research opportunity.

First up in the lending library:

🔹 Truvaga (cervical vagus nerve stimulation)
🔹 Vielight Neuro Gamma (photobiomodulation helmet)

More devices will be added as the platform scales.

Devices that show strong signals of benefit may move forward to neuroimaging studies with Jarred Younger, PhD at the University of Alabama.

SIGNAL is led by Tess Falor, PhD as Project Director; Todd Davenport, DPT, PhD, MPH & Maya Lindemann, RN, BSN as Co-PIs; Jarred Younger, PhD as an Advisor; John Haughton, MD, MS as Medical Advisor and Rivka Solomon as Advisor.

SIGNAL builds on:
📦 A MA device lending library already-running (30+ loans, led by advisor Rivka Solomon)
🧪 A 20-participant Truvaga observational cohort already underway (run by Tess and Rivka)

Hear more about the current observational Truvaga project and plans for SIGNAL during our Research Roundtable on August 21st.

Register here: https://us06web.zoom.us/webinar/register/3317842123237/WN_sm8onpafSGaZUFG0kY9GQA

Patients interested in participating in the SIGNAL study and device lending library can sign up and follow along as SIGNAL launches here:

renegade-research.org/signal

Thanks to @solve_cfs for supporting this project!

The Solve ME/CFS Initiative (Solve M.E.) is a nonprofit org dedicated to advancing research & accelerating progress for people living with ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs). SolveME.org

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IS IT TRUE?? Does tomato juice taste different at 5,000 feet for some reason? 🍅 🥤 Or are you more of a white wine and in-flight movie person?

#meditation #travel #chronicillness #socialjustice #gardens

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🐙 Our song is rather special. 🙂‍↔️

This year has been particularly special as we are #FrailAndFuirous about the neglect and harm being done to the #MillionsMissing world wide.

A huge thanks to the amazing @mayabee24 for teaming up with me to help pace ourselves with posting for ME/CFS awareness month 😘. Love you and your beautiful brain so much 🥰.

If you don’t follow her yet, @mayabee24 has a fantastic collection of Pedro Pascal themed posts with some very promising findings of really cool #ME and #LongCOVID research articles. Each post contains a tasty @pascalispunk image that not only hooks you to read more… but also color matches the figures from the paper 🥹. Her posts are not only improving accessibility for patients to read and comprehend high jargon research findings… but also provides soothing visual of Pedro Pascal for when the findings are rather tragic for QoL.

Little reminder to all my abled-body followers and friends 💙:Even though MECFS awareness month is over…for us patients, we are acknowledging it every month, every day, every hour, and with every breath we take. 🫶🏾 This is part of why @meactnet has made the #FrailAndFurious campaign a year long one.

The posts this month have been sooo wonderful 🐙🫂. We have connected with so many new people this month-Which has been so incredible 🐙🫶🏾. This community means so much to us 🥹🐙💙.

So once again, thank you so much for raising awareness for Myalgic Encephalomyelitis 🫂💙
We did an AMAZING job this year 🥹

🐙 xx

Video Description coming soon:

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Despite the pain💔, war, and destruction, we still smile and celebrate Eid. Eid Mubarak! Continue to support us, my friends, so that we can recover from this brutal war.🤍🤍🎉🎉
#freedom #freepalestine🇵🇸 #palestine🇵🇸 #explorepage #eidmubarak

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My dear friend, help my mother and don't give up on her. She loves you very much and asks you for help. Please don't let her down and don't let her down🥹💔

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Please pray for us, my friends 🙏🥹💔
#gazaunderattack #freepalestine🇵🇸 #palestine🇵🇸 #freedom #gaza

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How will the board ever take my cat's business decisions seriously when this is how he behaves in meetings?

#cats #succession #loganroy #tuxedocat #funny

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May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of ME/CFS. Here are some of their responses.

Visit the link in bio to join us in raising awareness.

#MECFSAwareness #EndMECFS

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Let’s make the invisible, visible. 💙

ME/CFS is a life-altering illness with no approved treatments and no clear roadmap. For the millions living with it, and those who care for them, uncertainty shapes daily life in many ways.

This May, we’re focusing on the questions we carry as a way to share what it means to live with this condition.

Through #MECFSis, our community is turning an invisible struggle into the momentum we need to drive research forward and find the answers this community deserves.

Thank you to everyone who’s shared so far. Your voice helps make ME/CFS harder to ignore. 💙

#MECFSis #MECFSAwareness #MECFS

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