The book Invisible Illness has caused a bit of a stir among many patients. Here are some further thoughts on the controversy.
virology.ws/2026/02/16/t...
16.02.2026 18:47
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The book Invisible Illness has caused a bit of a stir among many patients. Here are some further thoughts on the controversy.
virology.ws/2026/02/16/t...
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
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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...
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😂 nice!
(On instagram)
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)
Screenshot of nonsense Post description claiming PEM is a feature of autism and adhd. No mention ME or LC
Specially how they describe PEM in their description
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...
@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
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>>
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
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...
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”
Sometimes you just need some #PedroPascal in your #LomgCovid #MECFS research.
More #PedroPascalPapers coming soon!
When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #MECFS #LongCovid
When #PEM hits you and your ME buddies hard
“I was dying earlier today. Then I died, now I’m dead”
#pwME #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
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
Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...
More Pedro for you @verhac.bsky.social 😉
Story time with Pedro Pascal:
#SevereME & the #GreatestMEdicalScandal
The story of #MyalgicEncephalomyelitis
(Tap full screen for lyrics & music)
References: medium.com/@mayalindema...
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.
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.
Some #PedroPascalPapers to brighten up #SevereME week
It’s what inspired the #PedroPascalPapers!
Materialist photoshoot with text about ME
Not yet! On my list
@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.
'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...
Ever wondered about functional autoantibodies? Well, you are in luck...check out this webinar opportunity from @solveme.bsky.social happening on this Thursday!
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.
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
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.
