Lou

The image is a graphic for StudyME, highlighting a celebration of over 11,600 sign-ups. It features a colorful and festive background with confetti and people raising their hands in celebration. The text encourages to learn about 8 Reasons to Sign Up for OMF’s StudyME Registry!

The image contains four informational cards about the benefits of StudyME for ME/CFS research. Faster Research: StudyME facilitates easier recruitment of participants, speeding up publication of findings. Higher Quality Research: It helps researchers find ideal participants, leading to higher quality and more replicable findings. Increased Awareness: Annual surveys can highlight various challenges of living with ME/CFS and raise awareness. Expanded Funding: Demonstrating a patient community ready to participate helps researchers secure more funding for studies.

The image features four informational cards about the advantages of StudyME for ME/CFS research. More Collaboration: StudyME encourages global collaboration among ME/CFS researchers, leading to better insights. Reduced Failure Rate: It improves sample sizes for research, reducing the likelihood of studies being dismissed due to low sample sizes. Increased Credibility: StudyME can set the standard for recruiting high-quality participants, boosting confidence among government and pharma entities to invest in ME/CFS research. Stronger Community: It bridges the gap between researchers and patients, fostering collaboration and mutual learning.

🤝 Empowering Research Breakthroughs: StudyME's Collaborative Journey

OMF StudyME is a free global participant registry bridging the gap between individuals living with #MECFS, #LongCOVID and related diseases, and the researchers working tirelessly to uncover effective treatments and solutions.

Just saved all CDC'd #MECFS pages to the Wayback :)

Research study opportunity!

The Mestinon/LDN LIFT study is seeking eligible participants within 150 miles of Brigham and Women's Hospital at Harvard Medical School. See details below.

#pwME #MyalgicEncephalomyelitis #MECFS

www.omf.ngo/studyme

Thank you! I’m so sorry you’ve been sick so long too. I just try to take it moment by moment and find happiness in the little things. x

ME & my Christmas Christmas through the eyes of Fennine, Dutch cartoonist and ME-patient Table of contents

🎅 Christmas through the eyes of Fennine, Dutch cartoonist and ME-patient 🎄

Niet echt 'feestdagen' 😔

meglobalchronicle.wordpress.com/2024/12/15/m...

Facets of ME: Centering ME During the Holidays Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!

Time for our next #HolidayPacing post! We are working on pacing through the holidays together. We are tackling communication this weekend. It is a two-parter because communication around PEM and this illness is hard!

More info: www.meaction.net/2022/12/08/f...

#pwME #MECFS #Holidays

Support Keeping Telehealth - Take Action Today! Call or write your representatives using our easy-to-follow script!

Take Action Today -Expanded telehealth coverage is set to expire on Dec 31st. Call or email your members of Congress! We have an easy script for you to use. Check out our article: www.meaction.net/2024/12/11/s...

#pwME #Disability #MECFS #LongCovid #telehealth

Announcement!!! A New Large-Scale ME/CFS Biomarker Study (BioQuest)! - Open Medicine Foundation Learn about BioQuest, OMF's new ME/CFS biomarker study to identify a biomarker for ME/CFS that can be evaluated through a blood test.

Announcement!! A New Large-Scale ME/CFS Biomarker Study (BioQuest)!

Thanks to two generous grants, we have successfully secured $800,000—one-third of our goal—that will allow us to initiate a large-scale #MECFS biomarker study (BioQuest)!

Learn more 👉 www.omf.ngo/me-cfs-new-b...

Sensorium (2016) In the centre of some bone white linen, there is a spine embroidery in thick satin stitch. Emanating from the spine are thick burgundy lines in an undulant oval shape. This oval is bisected across the middle. In the top half, there is a section outlined in burgundy filled with coiling blue lines and a similar section in the bottom half. The rest of the undulant oval is filled with fine coiling burgundy lines. The spine is very straight, the rest of the embroidery is very coiled and busy. Lia’s initials are stitched in fine thread the same colour as the cloth at the bottom right.

Day 12 #ArtAdventCalendar • This #SciArt #anatomy and #symptomatology #embroidery, sensorium (2016), is my visualization of how hypersensitive my nervous system has become since the onset of #MECFS. #MedSky 🧶🐡🧪

paresthesia (hand 1) 2016 An embroidery on bone white linen. There is the faint outline of a hand, fingers apart. The hand is filled with thick dark blue lines intertwining and crossing over. There are finer thin lines in bone white beneath the thick blue lines. At the wrist, the thick blue lines end in strands of thick thread, hanging over the edge of the linen.

Day 6 #ArtAdventCalendar • This is my first #MECFS #symptomatology #embroidery: paresthesia (hand 1) 2016. The idea came to me while doing a meditation technique to dissect the tingling sensations in my body to make them less overwhelming. #SciArt #MedSky 🧶🧪🐡

Hand embroidery artwork of a Wren bird on a bramble branch

December 13th
"Fairy bird - Wren"
Thread painting -hand embroidery artwork
#ArtAdventCalendar #birds

The image features a scientist using a microscope in a laboratory setting. The text overlay reads "Last Day to Triple Your Impact" and highlights Giving Tuesday logo. The OMF logo is prominently displayed in the upper left corner.

Today, December 3, 2024, is International #GivingTuesday, marking the final hours of our Triple Giving November campaign!

There are just a FEW HOURS LEFT to have your donation tripled. Don’t wait—now is the time to give!

Donate today👉 www.omf.ngo?form=TGN2024

Body Map (2016) An outline of a naked woman is embroidered on linen in the same bone white colour as the linen. She stands legs together, her right hand covering her groin, her left hand, palm up, extended slightly to her side. She looks to the right. Her entire body except for her belly is covered in intricate markings representing different neurological sensations. Her face is a mask of green lines, feathery grey lines cover her shoulders and chest. There is a thick band of intricate burgundy stitching around her waist. Her forearms and hands are covered in thick blue undulant lines. Her right leg has bands of burgundy along the muscles, with small dots around them. Her inner left leg has a thick line of blue running up it, with thin branches spreading towards her outer leg.

Day 3 #ArtAdventCalendar & #InternationalDisabilitiesDay • I'm a disabled #embroidery artist whose work combines #anatomy and #symptomatology into #SciArt. Here is body map (2016), in which I stitched my neurological #MECFS symptoms freehand as I felt them.

she was tributaries (2016) An embroidery on bone white linen. There are many coral-like neurons in the vague shape of a brain embroidered in shades of blue. The bottom section is navy blue and transitions to a lighter blue at the top. The text at the bottom reads: she was tributaries, all electric.

Day 2 #ArtAdventCalendar • This #SciArt #embroidery depicts the electrical fog I feel in my brain due to #MECFS: she was tributaries (2016). It's also #WomensBrainHealthDay! Theme: social media habits. I limit my social media & block & mute when things feel off to reduce my cognitive fatigue.

The image features a hand holding a red heart shape. The text above reads: "Donations Now TRIPLED Up to $1 MILLION Through December 3!" At the bottom, there's a hashtag: "#TRIPLEGIVINGNOVEMBEROMF" with a heart icon.

Until December 3, 2024, EVERY dollar you give to OMF will be TRIPLED!

‼️We’re thrilled to announce that a generous donor has increased the matching fund, allowing us to triple donations up to $1 MILLION!

Donate hope 👉 www.omf.ngo?form=TGN2024

#pwME #pwLC #MECFS #LongCOVID

The image features Ron Davis and Linda Tannenbaum standing together and smiling warmly. Both are dressed in dark clothing, with Ron Davis wearing a blue ribbon pinned to his jacket. In the lower portion of the image, there is a promotional banner for #TripleGivingNovemberOMF. The banner emphasizes that all donations will be tripled during the period from November 1 to December 3, 2024.

Until Dec 3, EVERY dollar you give to OMF will be TRIPLED, up to $500,000.

Your $50 donation will triple to $150, $100 becomes $300, and $250 turns into $750. Help fund critical research and bring hope to millions suffering from #MECFS and #LongCOVID.

Donate hope 👉 www.omf.ngo?form=TGN2024

People who say “just get out and live!” As a way of scorning those who take covid precautions haven’t yet accepted what we already know.

We ARE living. We’ve simply adapted.

You will give up a LOT more than indoor dining if you become severely chronically ill.

Roadmap background with text overlaid and red and blue boxes. Text: Thank you to all the organizations that joined in telling the NIH to fund the ME/CFS Research Roadmap! Open Medicine Foundation Solve ME Patient-Led Research Collaborative ACT UP New York Strategies for High Impact Long COVID Justice Body Politic Long COVID Moonshot Mass ME Bateman Horne Center of Excellence ME International CFS/ME Associazione Italiana od World ME Alliance

Thank you for signing our letter to NIH!
Open Medicine Foundation
Solve ME
Patient-Led Research Collaborative
ACT UP New York
Strategies for High Impact
Long COVID Justice
Body Politic
Long COVID Moonshot
Mass ME
Bateman Horne Center
ME International
CFS/ME Associazione Italiana od
World ME Alliance

🔬Wondering how OMF selects treatments used for clinical trials? Let us illuminate our process for you. Learn more 👉 www.omf.ngo/treatment-trials.

Join us on this complex journey towards understanding the intricacies of ME/CFS. 🌟

Excellent news!

#CDC has a new page on infection-associated chronic sequelae. Of particular import: these chronic symptoms linger "even after appropriate treatment". 🧵

www.cdc.gov/ncezid/what-...

#NEISvoid... let's say I accept that I'm going to be working mostly from bed through the winter and have awhile before complete collapse to plan that.

What are some things I can do/buy that will make that easier & more pleasant?

Re-post if you pls ✨

Tomorrow the next ME/CFS Research Roadmap webinar will take place. The topic is metabolism in ME/CFS.

It's open to the public and attendees can participate in Q&A sessions. Register here event.roseliassociates.com/me-cfs-resea...

Body Map (2016) An outline of a naked woman is embroidered on linen in the same bone white colour as the linen. She stands legs together, her right hand covering her groin, her left hand, palm up, extended slightly to her side. She looks to the right. Her entire body except for her belly is covered in intricate markings representing different neurological sensations. Her face is a mask of green lines, feathery grey lines cover her shoulders and chest. There is a thick band of intricate burgundy stitching around her waist. Her forearms and hands are covered in thick blue undulant lines. Her right leg has bands of burgundy along the muscles, with small dots around them. Her inner left leg has a thick line of blue running up it, with thin branches spreading towards her outer leg.

For day 2 of #VirtualArtOfNeuro, my #symptomatology #embroidery body map (2016) was stitched while I experienced and visualized my many neuroimmune symptoms of #MECFS. #SciArt 🩺🧪🐡🧶

For sleep, I use a medley of different pillows placed in all sorts of ways, a rotation of 3 icepacks under my head all night, a heated blanket with 3 other blankets, air purifier, calming playlist & Benadryl. Zofran, low dose Ativan for nights with the dreaded adrenaline dump symptoms from POTS.

A piece of cauliflower that must’ve intentionally grown itself into the shape of a Yeti, so I drew eyes and a disgruntled mouth on it.

How can I still be this bad at pacing after 31 years of this crap? It’s always one step forward, two steps back. Back in the dark and deep ME/CFS hole again today.

But enjoy this photo of a Yeti I once found in my lunch.

A medium sized Great Pyrenees/Bully mix dog sleeping soundly on top of a soft blanket on a bed. Her paw is outstretched and touching the hand of a woman who is also in the bed, out of frame.

Oh and my bed also has a very important other feature, Mabel.

After a brief pause, I'm ready for more invitation codes to send out to members of the chronic illness/disability communities! About 3700 codes have gone out so far. Please fill out this form to donate codes, or send it to friends in this community in need of one. forms.gle/G7kRALEvha2o...

My bed has heated blanket, ice packs, magnifying light & ipad on hinged arms, rolling table that goes over my bed, 3 rolling carts (1: meds, snacks, wipes, bp cuff, 2: books, writing supplies, headphones, glasses - 3: art supplies). Have to always have things in the same place or my anxiety worsens.

The ME Association announces new post-mortem research partnership with Manchester Brain Bank - The M... The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and dorsal root ganglion.

The ME Association has formed a partnership with Manchester Brain Bank to allow ME/CFS patients to donate their brain and spinal cord to post-mortem medical research.

meassociation.org.uk/2023/10/the-...