Lou
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apeskygirl.bsky.social
Lou
@apeskygirl.bsky.social
280 followers 410 following 33 posts
Tree hugger with ME/CFS since 1992. #MEAction volunteer. Patient Advocate. OMF & Stanford Study Participant. ME/CFS • ND • POTS • EDS • One of the Millions Missing. Former Copywriter and Art Director. Now I watch squirrels and make things.
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apeskygirl.bsky.social
Lou @apeskygirl.bsky.social · Oct 8
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I’ve had ME/CFS for 31 yrs
11,322 days
25 yrs of debilitating illness until Dx at Stanford
I was 95% housebound
6 yrs later, 95% bedbound
4 yrs ago, teenage son Dx with ME/CFS
1 yr ago, youngest son Dx with ME/CFS
We’ve lost so many days
We’re still sick
But we’re still fighting
A striped pillowcase decorated with embroidered felt patches that read “11,322 days. Still Sick. Still fighting.”
Reposted by Lou
openmedf.bsky.social
🤝 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.
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.
February 20, 2025 at 3:32 PM
Reposted by Lou
exceedhergrasp1.bsky.social
Just saved all CDC'd #MECFS pages to the Wayback :)
firewordsparkler.bsky.social Nirali @firewordsparkler.bsky.social · Jan 31
You can also easily save pages on the Internet Archive by going to the Wayback Machine and putting a URL in their "Save Page Now" function web.archive.org
exceedhergrasp1.bsky.social It's ME(Jaime) @exceedhergrasp1.bsky.social · Jan 31
Concerned about disappearing pages?

Make a recurring donation to the Internet Archive. They fund & run the Wayback Machine, which can be used to see how pages looked in the past.

The IA has endured transparent attacks over the past few years. #DoSomething and donate here:

archive.org
January 31, 2025 at 6:29 PM
Reposted by Lou
meactnet.bsky.social
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
January 22, 2025 at 5:13 PM
Reposted by Lou
ludiekje.bsky.social
🎅 Christmas through the eyes of Fennine, Dutch cartoonist and ME-patient 🎄

Niet echt 'feestdagen' 😔

meglobalchronicle.wordpress.com/2024/12/15/m...
ME & my Christmas
Christmas through the eyes of Fennine, Dutch cartoonist and ME-patient Table of contents
meglobalchronicle.wordpress.com
December 15, 2024 at 2:58 PM
Reposted by Lou
meactnet.bsky.social
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
Facets of ME: Centering ME During the Holidays
Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!
www.meaction.net
December 14, 2024 at 10:06 PM
Reposted by Lou
meactnet.bsky.social
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
Support Keeping Telehealth - Take Action Today!
Call or write your representatives using our easy-to-follow script!
www.meaction.net
December 11, 2024 at 7:40 PM
Reposted by Lou
openmedf.bsky.social
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...
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.
www.omf.ngo
December 12, 2024 at 5:22 PM
Reposted by Lou
liapas.bsky.social
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 🧶🐡🧪
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.
December 12, 2024 at 4:30 PM
Reposted by Lou
liapas.bsky.social
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 🧶🧪🐡
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.
December 6, 2024 at 4:30 PM
Reposted by Lou
artbyemilytull.bsky.social
December 13th
"Fairy bird - Wren"
Thread painting -hand embroidery artwork
#ArtAdventCalendar #birds
Hand embroidery artwork of a Wren bird on a bramble branch
December 13, 2024 at 12:29 PM
Reposted by Lou
openmedf.bsky.social
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
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.
December 3, 2024 at 2:20 PM
Reposted by Lou
liapas.bsky.social
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.
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.
December 3, 2024 at 4:30 PM
Reposted by Lou
liapas.bsky.social
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.
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.
December 2, 2024 at 3:11 PM
Reposted by Lou
openmedf.bsky.social
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 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.
November 25, 2024 at 3:25 PM
Reposted by Lou
openmedf.bsky.social
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
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.
November 15, 2024 at 8:09 PM
Reposted by Lou
broadwaybabyto.bsky.social
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.
November 17, 2024 at 3:26 AM
Reposted by Lou
meactnet.bsky.social
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
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
November 15, 2024 at 5:24 PM
Reposted by Lou
openmedf.bsky.social
🔬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. 🌟
November 7, 2023 at 4:48 PM
Reposted by Lou
exceedhergrasp1.bsky.social
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-...
Chronic Symptoms Following Infections | What We Do | NCEZID | CDCCenters for Disease Control and Pre...
www.cdc.gov
October 31, 2023 at 5:45 PM
Reposted by Lou
exceedhergrasp1.bsky.social
#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 ✨
October 25, 2023 at 10:34 PM
Reposted by Lou
mecfsnews.bsky.social
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...
October 25, 2023 at 4:27 PM
Reposted by Lou
liapas.bsky.social
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 🩺🧪🐡🧶
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.
October 23, 2023 at 11:03 PM
apeskygirl.bsky.social
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 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.
October 21, 2023 at 5:28 PM
Reposted by Lou
julierehmeyer.bsky.social
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...
October 21, 2023 at 3:14 PM