Maya Lindemann
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mayalongcovid.bsky.social
Maya Lindemann
@mayalongcovid.bsky.social
1.4K followers 820 following 210 posts
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
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mayalongcovid.bsky.social
Maya Lindemann @mayalongcovid.bsky.social · Jun 3
Such an honor & privilege to represent the chronic illness community ❤️🌺
wearlumia.bsky.social Lumia @wearlumia.bsky.social · Jun 3
Meet Maya: After a 2020 COVID infection, @mayalongcovid.bsky.social went from diver & school nurse to bed-bound with ME/CFS, POTS & MCAS.
Now, she serves on Lumia’s PAC, bringing the chronic illness community’s voice forward. Read her story: tinyurl.com/wearlumia #longcovid #pots #wearlumia #pwME
Reposted by Maya Lindemann
renegaderesearch.bsky.social
We held a Volunteer Info Session today for people wanting to volunteer for Renegade Research!

Resources below include the volunteer session recording and slideshow, past recordings and research presentations, volunteer application, newsletter signup, published research, YouTube channel, more

🧵

1/
November 15, 2025 at 10:52 PM
Reposted by Maya Lindemann
renegaderesearch.bsky.social
Volunteer Info Session recording: www.youtube.com/watch?v=H40w...

@tessfalor.bsky.social, @isabelrb.bsky.social, @ellybrosius.bsky.social, @katboniface.bsky.social, @mayalongcovid.bsky.social with org overview, volunteer work, current/future projects

Slideshow: docs.google.com/presentation...

2/
Renegade Research Volunteer Information Session
YouTube video by Renegade Research
www.youtube.com
November 15, 2025 at 11:00 PM
Reposted by Maya Lindemann
melissajd.bsky.social
🤩🤩🤩
mayalongcovid.bsky.social Maya Lindemann @mayalongcovid.bsky.social · Sep 4
Sometimes you just need some #PedroPascal in your #LomgCovid #MECFS research.

More #PedroPascalPapers coming soon!
Collage of Pedro Pascal matched to ME/LC research infographics with research titles. “Girls be like ‘I needed that’ and it’s just Pedro Pascal”
September 14, 2025 at 10:28 PM
Reposted by Maya Lindemann
davetuller1.bsky.social
When an Australian ME/CFS study of an exercise intervention failed to find enough participants, the investigators decided to blame patient advicates instead of questioning their assumptions:
virology.ws/2025/09/08/t...
Trial By Error: Australian Investigators Blame ME/CFS Patient Advocates for Poor Recruitment in "Active Video Gaming" Trial | Virology Blog
By David Tuller, DrPH In a new paper, a team of investigators from the University of South Australia in Adelaide, Australia, describes a “pilot feasibility” ...
virology.ws
September 9, 2025 at 3:14 AM
mayalongcovid.bsky.social
@meactnet.bsky.social @exceedhergrasp1.bsky.social I’d like to bring to your attention there is a group of Neurodiversity drs & podcasters promoting PEM as a characteristic of autism & ND burnout (with zero mention of ME). Please reach out to them.

www.divergentpod.com/blog/ep-121
Ep 121 (S3): Burnout City: Burnout Symptoms at a Cellular Level
Patrick Casale and Dr. Neff are joined by Dr. Mel Houser, founder of All Brains Belong, as they discuss the connections between Autistic burnout and underlying health issues, what happens on a cellula...
www.divergentpod.com
September 9, 2025 at 6:29 AM
Reposted by Maya Lindemann
tomkindlon.bsky.social
Gifts for M.E. is a charity to provide useful items to ME/CFS patients in the United States launching in 2026

www.giftsforme.org

Image from September AMMES newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Gifts for M.E. Gifts for M.E. is a charity to provide useful items to ME/CFS patients in the United States. When launched in 2026, ME/CFS patients or their caretakers in the United States will be able to register to be considered for available gifts. Planned items include: black-out sleep masks (such as Manta Pro), noise-cancelling headphones, grocery delivery subscriptions, shower chairs, heart rate monitors, lower-stimulation gaming devices, and more. Selected applicants will receive their items at no cost. Read more here>>
September 6, 2025 at 1:57 AM
Reposted by Maya Lindemann
exceedhergrasp1.bsky.social
Beginning the Community Symposium for ME/CFS at Stanford. Will cover it, as this part is open to the public. 🧪

Housekeeping stuff going on right now.

If you want to join, you can find it here: stanford.zoom.us/webinar/regi...
September 5, 2025 at 3:04 PM
mayalongcovid.bsky.social
Sometimes you just need some #PedroPascal in your #LomgCovid #MECFS research.

More #PedroPascalPapers coming soon!
Collage of Pedro Pascal matched to ME/LC research infographics with research titles. “Girls be like ‘I needed that’ and it’s just Pedro Pascal”
September 4, 2025 at 2:13 AM
Reposted by Maya Lindemann
mayalongcovid.bsky.social
When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #MECFS #LongCovid
August 24, 2025 at 8:10 AM
mayalongcovid.bsky.social
When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #MECFS #LongCovid
August 24, 2025 at 8:10 AM
Reposted by Maya Lindemann
tomkindlon.bsky.social
ME Research UK @meresearchuk.bsky.social

Read more about the findings of a study on oxidative stress in ME/CFS and long COVID and whether this could influence future treatment: bit.ly/3UD17aJ

#mecfs #longcovid
OXIDATIVE STRESS IN ME/CFS AND LONG COVID Oxidative stress happens when reactive oxygen species (ROS) - unstable molecules - are produced in excess and damage cell components such as proteins, DNA, and cell membranes. A study showed higher than normal oxidative stress in ME/CFS and long COVID, and higher levels of glutathione - an antioxidant (a substance that neutralises ROS). Females had higher ROS; males had greater damage to mitochondria! lipids. unpaired electron damaged cell components The one or more unpaired electrons in ROS make them highly reactive and capable of causing damage. Shankar, V. et al (2025). Oxidative stress is a shared characteristic of ME/CFS and Long COVID. PubMed. INFORM. INFLUENCE. INVEST. SCO36942
August 20, 2025 at 8:21 PM
Reposted by Maya Lindemann
mayalongcovid.bsky.social
Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...
August 8, 2025 at 1:46 AM
mayalongcovid.bsky.social
Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...
August 8, 2025 at 1:46 AM
Reposted by Maya Lindemann
mayalongcovid.bsky.social
Some #PedroPascalPapers to brighten up #SevereME week
Pedro Pascal enticing you as ME research Validation of the Severity of Myalgic Encephalomyelitis by Other Measures than History Healthcare, 2020 This study confirms well defined differences in validated SF-36 physical activity questionnaire, daily steps, & cardiopulmonary exercise testing among the International Consensus Criteria (ICC) ME diagnosis severity categories: Mild- 50% reduction in pre-illness activity, Moderate-mostly housebound, Severe-mostly bedbound, Very severe-bedbound require assistance with physical function Pedro pascal dashing as ME research Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In ME UK Biobank Pre-Print, 2025 Clear differences exist in immune cells in people with mild/moderate vs severe ME/CFS & support stratification in diagnostic tools, management & treatment. Mild/Mod ME exhibited stronger correlation between cytotoxic marker expression & senescent T cells and DN MAITs suggesting frequent antigen exposure likely related to persistent infection or reactivation. Severe ME had ongoing uncontrolled pro-inflammatory immune system activation with more activated T cells, higher cell activation & pro-inflammatory cytokine production in response to stimulation. Pedro Pascal having fun as ME research Assessing Functional Capacity in ME/CFS J Clin Med, 2024 Categories • Basic Function/ Personal Hygiene • Walking/ Movement • Being Upright • Activities in the Home • Communication • Activities outside the Home • Reactions to Light & Sound • Concentration Scores O. Cannot do this 1. Capacity severely limited for at least 3 days 2. Can do little else same day +2 days after 3. Can do little else same day 4. Must limit activity same day 5. Rarely affects other activities 6. Unproblematic Pedro Pascal melancholy as ME Research Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis PLOS, 2015 The health-related quality of life of ME/CFS is the lowest of all the compared conditions (including multiple sclerosis, lung cancer, renal failure, stroke etc) and significantly lower than the population mean. This analysis confirms that the poor health related quality of life of ME/CFS is distinctly different from & not a proxy of other included conditions.
August 5, 2025 at 7:30 AM
mayalongcovid.bsky.social
Some #PedroPascalPapers to brighten up #SevereME week
Pedro Pascal enticing you as ME research Validation of the Severity of Myalgic Encephalomyelitis by Other Measures than History Healthcare, 2020 This study confirms well defined differences in validated SF-36 physical activity questionnaire, daily steps, & cardiopulmonary exercise testing among the International Consensus Criteria (ICC) ME diagnosis severity categories: Mild- 50% reduction in pre-illness activity, Moderate-mostly housebound, Severe-mostly bedbound, Very severe-bedbound require assistance with physical function Pedro pascal dashing as ME research Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In ME UK Biobank Pre-Print, 2025 Clear differences exist in immune cells in people with mild/moderate vs severe ME/CFS & support stratification in diagnostic tools, management & treatment. Mild/Mod ME exhibited stronger correlation between cytotoxic marker expression & senescent T cells and DN MAITs suggesting frequent antigen exposure likely related to persistent infection or reactivation. Severe ME had ongoing uncontrolled pro-inflammatory immune system activation with more activated T cells, higher cell activation & pro-inflammatory cytokine production in response to stimulation. Pedro Pascal having fun as ME research Assessing Functional Capacity in ME/CFS J Clin Med, 2024 Categories • Basic Function/ Personal Hygiene • Walking/ Movement • Being Upright • Activities in the Home • Communication • Activities outside the Home • Reactions to Light & Sound • Concentration Scores O. Cannot do this 1. Capacity severely limited for at least 3 days 2. Can do little else same day +2 days after 3. Can do little else same day 4. Must limit activity same day 5. Rarely affects other activities 6. Unproblematic Pedro Pascal melancholy as ME Research Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis PLOS, 2015 The health-related quality of life of ME/CFS is the lowest of all the compared conditions (including multiple sclerosis, lung cancer, renal failure, stroke etc) and significantly lower than the population mean. This analysis confirms that the poor health related quality of life of ME/CFS is distinctly different from & not a proxy of other included conditions.
August 5, 2025 at 7:30 AM
Reposted by Maya Lindemann
swastrosarah.bsky.social
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Jul 31
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
July 31, 2025 at 7:11 AM
Reposted by Maya Lindemann
bhanlon15.bsky.social
'POTS Practitioners: Dr. Jen Curtin on the RTHM approach to improving care for complex patients'

'Dr. Jennifer Curtin is using the latest technologies to improve patient care and offerings. She was a ME/CFS patient herself when she went to medical school..'

the-potscast.castos.com/episodes/pot...
POTS Practitioners: Dr. Jen Curtin on the RTHM approach to improving care for complex patients
Dr. Jennifer Curtin is using the latest technologies to improve patient care and offerings.  She was a ME/CFS patient herself when she went to medical school, and now is Medical Director of the R...
the-potscast.castos.com
July 29, 2025 at 4:12 PM
Reposted by Maya Lindemann
meactnet.bsky.social
Ever wondered about functional autoantibodies? Well, you are in luck...check out this webinar opportunity from @solveme.bsky.social happening on this Thursday!
solveme.bsky.social Solve M.E. @solveme.bsky.social · Jul 17
Register for our July 31 @ 12 pm PT / 3 pm ET webinar with #MECFS Catalyst Award winner
@virusesimmunity.bsky.social
(@yaleschoolofmed.bsky.social).

Dr. Iwasaki will discuss her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

Sign up here: ow.ly/oPsF50Wrv74
Rectangular graphic with teal lettering advertises a webinar on Thursday, July 31 at 12 pm PT / 3 pm ET "Probing Functional Autoantibodies in Patients with ME/CFS." Two women with shoulder-length brown hair are pictured: Dr. Akiko Iwasaki (Yale School of Medicine) and Emily Taylor (President and CEO of Solve M.E.)
July 29, 2025 at 8:29 PM
Reposted by Maya Lindemann
kaufmanmd.bsky.social
No politics, I promise. None of my rants, I promise.
Take a look at our new episode of Unraveled: Understanding Complex Illness.
This is a long and fun conversation with Dr. Tania Dempsey where we focus on the confusing world of Tick Borne Infections.

youtu.be/_1mEDBroU9Y
Interview with Tania Dempsey MD
YouTube video by Unraveled: Understanding Complex Illness
youtu.be
July 27, 2025 at 5:42 PM
Reposted by Maya Lindemann
kaufmanmd.bsky.social
So sickening. I am ashamed to call myself a Jew. Israel has joined the world of darkness, right up there with the other fascistic evil states. So sad and shocking.
maris.bsky.social Maris Kreizman @maris.bsky.social · Jul 24
My overwhelming memory from Hebrew school is being young and seeing images of ancestors starving in the camps. “Never again” was our religion. Here is the paper of record today. www.nytimes.com/2025/07/24/w...
Gazans Are Dying of Starvation
www.nytimes.com
July 26, 2025 at 4:43 AM
Reposted by Maya Lindemann
renegaderesearch.bsky.social
Announcement!!

1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC
July 22, 2025 at 5:26 PM
Reposted by Maya Lindemann
renegaderesearch.bsky.social
✅️ Accelerate research and care for ME/CFS and Long COVID

Our work has already made an impact on the lives of our participants, both in terms of quality of life improvements and developing a community where patients and their caregivers are listened to and empowered.

www.zeffy.com/en-US/fundra...
Accelerate research and care for ME/CFS & Long COVID
Renegade Research (RR) is a non-profit, 501c3 decentralized organization pioneering patient and caregiver-led research with a focus on ME/CFS, Long COVID (LC) and other infection associated chronic il...
www.zeffy.com
May 18, 2025 at 2:24 AM
Reposted by Maya Lindemann
binitakane.bsky.social
I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians.

Look at the symptoms that these ‘abusive’ parents may report.
A slide showing boxes with multiple symptoms and traits commonly seen in post-viral conditions eg allergies, ADHD, sleep problems.
July 15, 2025 at 8:13 AM
Reposted by Maya Lindemann
mayalongcovid.bsky.social
Here’s an easier link!

docs.google.com/forms/d/e/1F...
July 14, 2025 at 7:41 PM
Reposted by Maya Lindemann
mayalongcovid.bsky.social
If the first link didn’t work- try this one

docs.google.com/forms/d/e/1F...
Study Design Input-ME pts only
Renegade Research is planning a study on people with ME using Vielight Gamma (red light with intranasal applicator) We currently have preliminary funds from Kanro to develop a study, but no funds fo...
docs.google.com
July 14, 2025 at 7:33 PM