iiinova — where your digital self keeps evolving

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Tom Kindlon @tomkindlon.bsky.social · 15/08/2026

(US only I believe) Borrow a Device & Report How It Works for You - @renegaderesearch.bsky.social & @solveme.bsky.social www.renegade-research.org/signal From @massmecfs.bsky.social Newsletter #LongCovid #MEcfs @mayalongcovid.bsky.social @tessfalor.bsky.social @sunsopeningband.bsky.social

Borrow a Device and Report How It Works for You

Solve M.E. has announced a Catalyst Award to Renegade Research to set up a lending program for therapeutic devices that may help manage the symptoms of ME/CFS or Long COVID. The first devices in the study are the Truvaga vagus nerve stimulation device and the Vielight red light therapy device. Participants will contribute data on the impact of the devices. Learn more and register here.

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Renegade Research @renegaderesearch.bsky.social · 20/07/2026

6/ SIGNAL is led by Tess Falor, PhD (@tessfalor.bsky.social) as Project Director; Todd Davenport, DPT, PhD, MPH (@sunsopeningband.bsky.social) & Maya Lindemann, RN, BSN (@mayalongcovid.bsky.social) as Co-PIs; Jarred Younger, PhD as an Advisor ...

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Renegade Research @renegaderesearch.bsky.social · 15/11/2025

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/

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Renegade Research @renegaderesearch.bsky.social · 15/11/2025

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/

youtube.com

Renegade Research Volunteer Information Session

YouTube video by Renegade Research

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Melissa Jo @melissajd.bsky.social · 14/09/2025

🤩🤩🤩

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David Tuller @davetuller1.bsky.social · 09/09/2025

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...

virology.ws

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” ...

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Tom Kindlon @tomkindlon.bsky.social · 06/09/2025

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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Maya Lindemann @mayalongcovid.bsky.social · 04/09/2025

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 · 24/08/2025

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 · 24/08/2025

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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Tom Kindlon @tomkindlon.bsky.social · 20/08/2025

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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Maya Lindemann @mayalongcovid.bsky.social · 08/08/2025

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 · 08/08/2025

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 · 05/08/2025

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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sarah boothby @swastrosarah.bsky.social · 31/07/2025

@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.

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Billy Hanlon @bhanlon15.bsky.social · 29/07/2025

'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...

the-potscast.castos.com

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...

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#MEAction Network @meactnet.bsky.social · 29/07/2025

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

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David Kaufman @kaufmanmd.bsky.social · 27/07/2025

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

youtu.be

Interview with Tania Dempsey MD

YouTube video by Unraveled: Understanding Complex Illness

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David Kaufman @kaufmanmd.bsky.social · 26/07/2025

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.

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Renegade Research @renegaderesearch.bsky.social · 22/07/2025

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

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Renegade Research @renegaderesearch.bsky.social · 18/05/2025

✅️ 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...

zeffy.com

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...

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Binita Kane @binitakane.bsky.social · 15/07/2025

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.

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The Real McCoy @rippermd41.bsky.social · 14/07/2025

Potential study for those with pre-Covid #MECFS and cognitive impairment. They’re looking for feedback on the study design. Took me less than 3 mins to fill out. #pwME

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Maya Lindemann @mayalongcovid.bsky.social · 14/07/2025

📣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

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Cohen Center for Recovery from Complex Chronic Illness @coresinai.bsky.social · 03/07/2025

Be part of a clinical trial investigating a device designed to assist cognitive function in Long COVID patients. For more information, contact CoreResearch@MountSinai.org.

Recruitment flyer from the Icahn School of Medicine at Mount Sinai for a research study on Long COVID. The flyer features a headline “Participants Needed” with a subheading asking if you are experiencing brain fog, memory problems, or thinking problems from Long COVID. A photo in the top right shows a man wearing a headband-like research device. Study details are listed: 8 weeks long, using the device at home for 4 weeks, completing online surveys, attending 7 virtual video visits and 3 in-person visits. Compensation up to $400 for completing all aspects of the trial. Eligibility: Long COVID, cognitive dysfunction associated with Long COVID, age over 18, and fluent in English. Contact information: CoreResearch@mountsinai.org and phone number 212-241-8454. Study dates: 11/18/2024 to 11/11/2025. Principal Investigator: David Putrino, PT, PhD, at the Cohen Center for Recovery from Complex Chronic Illnesses (CoRE).

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 29/06/2025

To be clear, literally tucked into the food supplies. Hidden in the flour

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María Richardson @diatoma.bsky.social · 29/06/2025

Now dreaming of a conversation (and/or interview for us to also watch/participate) between @hankgreen.bsky.social and @virusesimmunity.bsky.social @putrinolab.bsky.social @ahandvanish.bsky.social @exceedhergrasp1.bsky.social Amy Proal from @polybiorf.bsky.social and other stellar researchers

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Hank Green @hankgreen.bsky.social · 28/06/2025

Hello…doing some research now on the increasing viral impact on people as we went super global as a potential driver of immune disregulation. I’ve got some good leads on the current state of research but if there’s anyone who knows anything they think I should know, please let me know!!

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Maya Lindemann @mayalongcovid.bsky.social · 29/06/2025

It is so important to understand that will Covid may not have as high mortality, it continues to cause high morbidity.

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis
J Gen Int Med, 2025
ME/CFS prevalence after COVID infection in this prospective study was found to be 4.5%, up from 0.2-1% general pre-pandemic levels.
Post Exertional Malaise, the cardinal symptom of ME/CFS, was the most common and most debilitating symptom among those with Long Covid.
Second most common symptoms were cognitive impairment & orthostatic intolerance.

Transcriptional reprogramming primes
CD8+ T cells toward exhaustion in ME
PNAS, 2024
Results suggest that ME leaves epigenetic scars on T cells, priming them toward terminal exhaustion, even after initial infection is cleared
T cell exhaustion markers are upregulated following exercise challenge potentially contributing to inflammation & PEM

Long Covid Now Looks Like a
Neurological Disease
Scientific American, 2023
Covid protein found in neurons & astrocytes up to 3 months after initial infection in those with neuropsychiatric symptoms. Autopsies have found Covid RNA in the brain up to 8 months after infection.
Those with cognitive problems have immune-related abnormalities in their cerebrospinal fluid & higher amounts of immune cells in the brain that should not be there, causing inflammation.
"(Long Covid) is not a psychological or psychosomatic disorder; this is a neuroimmune disorder"

Persistent neurocognitive deficits in long
COVID: Evidence of structural changes and network abnormalities following mild infection Cortex, 2025
Structural MRI analyses revealed reduced gray matter concentrations in both those with & without brainfog after mild Covid infection compared to healthy controls.
The study findings indicate that even mild COVID-19 can result in persistent neurocognitive deficits, structural brain alterations, & functional network abnormalities, both in individuals with & without brain fog.

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Maya Lindemann @mayalongcovid.bsky.social · 29/06/2025

Here are some great research articles viral impact and immunity. Second others recommendations of @exceedhergrasp1.bsky.social @virusesimmunity.bsky.social @putrinolab.bsky.social @openmedf.bsky.social @patientled.bsky.social

Unravelling the Connection Between Energy
Metabolism and Immune Senescence/Exhaustion in Patients with Myalgic Encephalomyelitis
Biomolecules, 2025
In ME there is a bidirectional feedback loop between mitochondrial & immune dysfunction.
Mitochondrial dysfunction leads to redox imbalance, increased ROS production & oxidative stress, which can damage mDNA (mitochondrial DNA). This triggers immune activation & inflammation.
Chronic immune activation & metabolic disturbances contribute to immune senescence (aging) & exhaustion.
These immune states exacerbate mitochondrial stress & perpetuate the cycle of mitochondrial and immune dysfunction.

Microglia dysfunction, neurovascular inflammation & focal neuropathologies are linked to... systemic inflammation in COVID
Nature Neuroscience, 2025
Microglial dysfunction, mitochondrial failure & cell death occurs at sites of Covid-associated vascular inflammation. These pathologies are found in several areas of the brain, but more severe in the medulla, where key autonomic centers are localized.
Covid induced inflammation may lead to gliovascular failure in the brain, which could be a common contributor to COVID-19-related neuropathologies

Long COVID science, research and policy
Nature, 2024
Several mechanistic pathways are implicated in Long
COVID, including viral persistence, immune dysregulation, mitochondrial dysfunction, complement dysregulation, endothelial inflammation and microbiome dysbiosis.
Manifestations of long COVID, including heart disease, diabetes, myalgic encephalomyelitis and dysautonomia are chronic conditions that last a lifetime.
Only 7-10% are fully recovered at 2 years.

Current update on the neurological manifestations of long COVID
PubMedID: 39850323, 2024
Neuroinflammation: elevated levels of pro-inflammatory cytokines & autoantibodies @chronic inflammation in central & peripheral nervous systems.
Latent virus reactivation exacerbates & viral reservoirs may perpetuate inflammation.
Endothelial dysfunction damages blood brain barrier.
Hypometabolism likely due to mitochondrial dysfunction & oxidative stress are found in high ACE2 areas such as brainstem, hippocampus, olfactory bulb.
Autonomic dysfunction is possibly due to damage to the brainstem & vagus nerve. Genetic susceptibility

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Maya Lindemann @mayalongcovid.bsky.social · 24/06/2025

Some more Pedro Pascal as ME & LC research to get you through the week #PedroPascalPapers #MillionsMissing Who’s your daddy? (Sound on)

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Maya Lindemann @mayalongcovid.bsky.social · 24/06/2025

Some more Pedro Pascal as ME & LC research to get you through the week #PedroPascalPapers #MillionsMissing Who’s your daddy? (Sound on)

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 13/06/2025

Your reminder that #MEAction has a ✨protest guide✨ for people with energy-limiting illnesses like #MECFS: #DisabilitySky #NEISvoid www.meactions.org/_files/ugd/b...

meactions.org

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 11/06/2025

The way she refuses to be derailed and reiterates a handful of important messages is a masterclass in activism narrative.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/06/2025

Article in The Atlantic by Ed Yong | "Fatigue Can Shatter a Person" "Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.” Read here 👉 ow.ly/QpLh50W6hGL

ow.ly

Fatigue Can Shatter a Person

Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience.

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Maya Lindemann @mayalongcovid.bsky.social · 06/06/2025

The Princess of Bed-Hair 🎶 My rewrite of Fresh Prince of Bel-Air, but #POTS #POTSie #Spoonie #Dysautonomia #MECFS

Background image maya in scuba gear floating in water with hair like a Smurf
Text/ fresh princess of bedhair- a write on fresh prince of bel air for pots

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Maya Lindemann @mayalongcovid.bsky.social · 06/06/2025

The Princess of Bed-Hair 🎶 My rewrite of Fresh Prince of Bel-Air, but #POTS #POTSie #Spoonie #Dysautonomia #MECFS

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Verena Hackl @verhac.bsky.social · 05/06/2025

#PedroPascalPapers ?! 😆🥹😍👏 I am already a huge fan. #MECFS #LongCovid

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