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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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Maya Lindemann @mayalongcovid.bsky.social · Jun 3

Such an honor & privilege to represent the chronic illness community ❤️🌺

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

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Maya Lindemann @mayalongcovid.bsky.social · 23d

🫠

Reposted by Maya Lindemann

Melissa Jo @melissajd.bsky.social · 26d

🤩🤩🤩

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”

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Maya Lindemann @mayalongcovid.bsky.social · 27d

😂 nice!

Maya Lindemann @mayalongcovid.bsky.social · Sep 9

(On instagram)

Maya Lindemann @mayalongcovid.bsky.social · Sep 9

Hopefully you’re able to reach them & get their language corrected. They are spreading misinformation like wildfire. There are ND influencers now pushing “pem is new name for burnout” based on this podcast. Several of us campaigned the last few days & got one with 1k+ shares taken down (no apology)

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Maya Lindemann @mayalongcovid.bsky.social · Sep 9

Specially how they describe PEM in their description

Screenshot of nonsense
Post description claiming PEM is a feature of autism and adhd. No mention ME or LC

Reposted by Maya Lindemann

David Tuller @davetuller1.bsky.social · Sep 9

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

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Maya Lindemann @mayalongcovid.bsky.social · Sep 9

@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

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Reposted by Maya Lindemann

Tom Kindlon @tomkindlon.bsky.social · Sep 6

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>>

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Reposted by Maya Lindemann

It's ME(Jaime) @exceedhergrasp1.bsky.social · Sep 5

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...

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Maya Lindemann @mayalongcovid.bsky.social · Sep 4

Sometimes you just need some #PedroPascal in your #LomgCovid #MECFS research.

More #PedroPascalPapers coming soon!

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Reposted by Maya Lindemann

Maya Lindemann @mayalongcovid.bsky.social · Aug 24

When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #MECFS #LongCovid

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Maya Lindemann @mayalongcovid.bsky.social · Aug 24

When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #MECFS #LongCovid

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Reposted by Maya Lindemann

Tom Kindlon @tomkindlon.bsky.social · Aug 20

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

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Reposted by Maya Lindemann

Maya Lindemann @mayalongcovid.bsky.social · Aug 8

Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...

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Maya Lindemann @mayalongcovid.bsky.social · Aug 8

More Pedro for you @verhac.bsky.social 😉

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Maya Lindemann @mayalongcovid.bsky.social · Aug 8

Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...

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Reposted by Maya Lindemann

Maya Lindemann @mayalongcovid.bsky.social · Aug 5

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.

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Maya Lindemann @mayalongcovid.bsky.social · Aug 5

Some #PedroPascalPapers to brighten up #SevereME week

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Maya Lindemann @mayalongcovid.bsky.social · Aug 3

It’s what inspired the #PedroPascalPapers!

Maya Lindemann @mayalongcovid.bsky.social · Aug 1

Not yet! On my list

Materialist photoshoot with text about ME

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Reposted by Maya Lindemann

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

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

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Reposted by Maya Lindemann

Billy Hanlon @bhanlon15.bsky.social · Jul 29

'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

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Reposted by Maya Lindemann

#MEAction Network @meactnet.bsky.social · Jul 29

Ever wondered about functional autoantibodies? Well, you are in luck...check out this webinar opportunity from @solveme.bsky.social happening on this Thursday!

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.)

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Maya Lindemann @mayalongcovid.bsky.social · Jul 28

The OP shows what is so deeply wrong with democrats today.
You’re exactly right. Being told what to do/think just inspires defiance and distrust. What ppl need is clear info.

No one should trust anyone who cannot explain why.

And also teaching how to identify mis/disinfo & propaganda.