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Maya Lindemann

@mayalongcovid.bsky.social

RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity

214 Posts1412 Follower815 Folgt
Renegade Research@renegaderesearch.bsky.social · 10mo ago

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/

David Tuller@davetuller1.bsky.social · 12mo ago

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

Maya Lindemann @mayalongcovid.bsky.social · 12mo ago

@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...

divergentpod.com

It's ME(Jaime)@exceedhergrasp1.bsky.social · last yr.

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...

Welcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. After registering, you will receive a confirmation email about joining the webinar.

The Stanford Genome Technology Center will be hosting a virtual Community Symposium on Friday, September 5th from 8:00am-2:30pm (PST)! You will have the opportunity to hear from speakers who will pres...

stanford.zoom.us

It's ME(Jaime)@exceedhergrasp1.bsky.social · last yr.

At the Stanford #MECFS Conference today through Thurs. As per usual, the first few days are closed, because they feature unpublished data-- open session at the end of the week. Zoom workplace shutting itself down and crashing my computer lately. Pretty frustrating during a conference!

sarah boothby@swastrosarah.bsky.social · last yr.

@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 · last yr.

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

Billy Hanlon@bhanlon15.bsky.social · last yr.

'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

#MEAction Network@meactnet.bsky.social · last yr.

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 · last yr.

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.)
Renegade Research@renegaderesearch.bsky.social · last yr.

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

Bild
Renegade Research@renegaderesearch.bsky.social · last yr.

✅️ 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...

zeffy.com

Binita Kane@binitakane.bsky.social · last yr.

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.
Maya Lindemann @mayalongcovid.bsky.social · last yr.

Here’s an easier link! 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

Maya Lindemann @mayalongcovid.bsky.social · last yr.

📣PwME(preCovid): I need your input on a study design. Please fill out this quick survey gformsapp.com/f/1elUnYTbc-... I’ve been working on this project for over a year and am so excited to share it with you @remissionbiome.bsky.social

Study Design Input 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 for participant compensation. As a patient led research project, we need YOUR input to determine how we can complete this study or how much more we'd need to fundraise for compensation & international shipping. Eligibility: -ME prior to 2020 (not from COVID) -Fluent English -Cognitive impairment/Brainfog Participant Requirements: -Use device per protocol (3-6x a week) -Complete daily survey (~2min) -Complete bi/weekly surveys including FUNCAP & Cognitive Assessment (5-15min) -Maintain email communication with study staff