Brian Shuell
@bshuell.bsky.social
Living with myalgic encephalomyelitis, Living a limited life, missing from many places. Aspiring to be well again. Occasionally bipedal. Twitter/X refugee. #mecfs
A very good 17 minute documentary on POTS. If you are someone you love suffers from POTS this might be a helpful video to share with them and would be good to share with Healthcare providers.
POTS : An Invisible Illness | Full Movie
YouTube video by PCARES
youtube.com
December 6, 2025 at 6:06 PM
A very good 17 minute documentary on POTS. If you are someone you love suffers from POTS this might be a helpful video to share with them and would be good to share with Healthcare providers.
Is this one of the many facets of PEM that is found in people with #longcovid and #mecfs?
Your Brain Has a Built-In Isolation Mode - Neuroscience News
New research uncovers the exact immune-to-brain pathway that drives the loss of social motivation during sickness.
neurosciencenews.com
November 26, 2025 at 2:13 PM
Is this one of the many facets of PEM that is found in people with #longcovid and #mecfs?
I have long Covid. Don’t call my chronic disease a ‘journey’ www.statnews.com/2025/11/25/c... via @statnews.com
I have long Covid. Don’t call my chronic disease a ‘journey’
A “journey” is something you choose. No one chooses chronic illness.
www.statnews.com
November 26, 2025 at 10:39 AM
I have long Covid. Don’t call my chronic disease a ‘journey’ www.statnews.com/2025/11/25/c... via @statnews.com
Reposted by Brian Shuell
Some healthcare providers are still referring to #mecfs and #longcovid as psychological or "functional" despite considerable research to the contrary. Here, I review the latest findings and expert thinking, with potential for treatment: www.medscape.com/viewarticle/...
Research Into ME/CFS Pathology Points to Possible Treatments
With greater understanding of the complex pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome, researchers aim to target treatments.
www.medscape.com
November 8, 2025 at 4:33 PM
Some healthcare providers are still referring to #mecfs and #longcovid as psychological or "functional" despite considerable research to the contrary. Here, I review the latest findings and expert thinking, with potential for treatment: www.medscape.com/viewarticle/...
Reposted by Brian Shuell
"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
www.medscape.com
October 31, 2025 at 1:18 PM
"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...
Reposted by Brian Shuell
🎥 Recordings Available: Community Symposium on the Molecular Basis of ME/CFS
👉 Access them here: ow.ly/Aw2G50XcIIO
#MECFS #pwME
👉 Access them here: ow.ly/Aw2G50XcIIO
#MECFS #pwME
October 21, 2025 at 9:55 PM
🎥 Recordings Available: Community Symposium on the Molecular Basis of ME/CFS
👉 Access them here: ow.ly/Aw2G50XcIIO
#MECFS #pwME
👉 Access them here: ow.ly/Aw2G50XcIIO
#MECFS #pwME
Reposted by Brian Shuell
Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study - Journal of Translational Medicine
Background mTOR activation is associated with chronic inflammation in ME/CFS. Previous studies have shown that sustained mTOR activation may cause chronic muscle fatigue by inhibiting ATG13-mediated a...
doi.org
October 21, 2025 at 4:41 PM
Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...
Reposted by Brian Shuell
Sunday morning read: www.npr.org/2025/10/18/n...
A caregiver's survival guide: Advice from people who've been there
Family caregivers offer their wit, wisdom and survival tips for the hardest unpaid job in America.
www.npr.org
October 19, 2025 at 1:15 PM
Sunday morning read: www.npr.org/2025/10/18/n...
Reposted by Brian Shuell
Someone knowing their limits and stopping before a crash starts is an important part of pacing yourself. Very concerning conclusions.
Essentially they say they didn’t find physiological evidence people with ME/CFS fatigue faster than controls, but instead that pwME quit on tasks sooner, and they argue that’s what should be studied about ME—the will to make an effort, not the effects effort has on us.
2/
2/
October 18, 2025 at 8:54 PM
Someone knowing their limits and stopping before a crash starts is an important part of pacing yourself. Very concerning conclusions.
Just a reminder that this is coming up quickly, on 10/31. You can register to watch remotely or in person. Im very curious to see what they come up with.
IACC Long Covid Case Competition at UMich Ross school of business. Open to the public, in person or online. #Longcovid #mecfs #POTS
10/31/25: University of Michigan, '2025 IACC Long Covid Case Competition'
'A student-led initiative at the University of Michigan aiming to raise awareness and drive industry engagement around infection-associated chronic conditions (IACC) like Long Covid...'
www.bus.umich.edu/Conferences/...
'A student-led initiative at the University of Michigan aiming to raise awareness and drive industry engagement around infection-associated chronic conditions (IACC) like Long Covid...'
www.bus.umich.edu/Conferences/...
October 18, 2025 at 2:05 PM
Just a reminder that this is coming up quickly, on 10/31. You can register to watch remotely or in person. Im very curious to see what they come up with.
This is a beautifully worded description of how people with ME have to navigate the world. I have yet to meet a person with ME who "prefers" living like this. In fact, we abhor it.
Of course everyone affected knows ME is the opposite—as you say, our loved ones have to beg us to do less to stay safe, when our instinct is always to do more (at our peril).
3/3
3/3
October 18, 2025 at 12:51 PM
This is a beautifully worded description of how people with ME have to navigate the world. I have yet to meet a person with ME who "prefers" living like this. In fact, we abhor it.
Reposted by Brian Shuell
#NEISvoid inside baseball—
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
"ME/CFS isn’t about doing less by choice.
It’s about the body’s inability to recover.
It’s time to shift the narrative from motivation to biology."
Thank you @sunsopeningband.bsky.social et al for writing this new manuscript:
www.nature.com/articles/s41...
It’s about the body’s inability to recover.
It’s time to shift the narrative from motivation to biology."
Thank you @sunsopeningband.bsky.social et al for writing this new manuscript:
www.nature.com/articles/s41...
Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome
Nature Communications - Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome
www.nature.com
October 18, 2025 at 3:55 AM
#NEISvoid inside baseball—
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
Reposted by Brian Shuell
Important thread for #pwME & #LongCovid (this affects y’all too). We need to dismantle/replace this dangerous & outdated paradigm once & for all, & we need NIH research funding to do that, but the people assigned to “help” us at NIH keep showing themselves to be enemies, not friends
#NEISvoid inside baseball—
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
The NIH team’s response to this (the Davenport et al comment) is awful.
It’s here: www.nature.com/articles/s41...
1/
"ME/CFS isn’t about doing less by choice.
It’s about the body’s inability to recover.
It’s time to shift the narrative from motivation to biology."
Thank you @sunsopeningband.bsky.social et al for writing this new manuscript:
www.nature.com/articles/s41...
It’s about the body’s inability to recover.
It’s time to shift the narrative from motivation to biology."
Thank you @sunsopeningband.bsky.social et al for writing this new manuscript:
www.nature.com/articles/s41...
October 18, 2025 at 4:37 AM
Important thread for #pwME & #LongCovid (this affects y’all too). We need to dismantle/replace this dangerous & outdated paradigm once & for all, & we need NIH research funding to do that, but the people assigned to “help” us at NIH keep showing themselves to be enemies, not friends
Reposted by Brian Shuell
Of course everyone affected knows ME is the opposite—as you say, our loved ones have to beg us to do less to stay safe, when our instinct is always to do more (at our peril).
3/3
3/3
October 18, 2025 at 5:33 AM
Of course everyone affected knows ME is the opposite—as you say, our loved ones have to beg us to do less to stay safe, when our instinct is always to do more (at our peril).
3/3
3/3
Reposted by Brian Shuell
Rolling Stone article about Long Covid's effects on student education. It tracks.
If you're an educator, please learn about this illness.
Not part of the article, but good to know: For many, Long Covid is the development of MECFS, a condition which frequently begins after a viral illness.
If you're an educator, please learn about this illness.
Not part of the article, but good to know: For many, Long Covid is the development of MECFS, a condition which frequently begins after a viral illness.
October 18, 2025 at 12:34 AM
Rolling Stone article about Long Covid's effects on student education. It tracks.
If you're an educator, please learn about this illness.
Not part of the article, but good to know: For many, Long Covid is the development of MECFS, a condition which frequently begins after a viral illness.
If you're an educator, please learn about this illness.
Not part of the article, but good to know: For many, Long Covid is the development of MECFS, a condition which frequently begins after a viral illness.
Reposted by Brian Shuell
The reason they're coming after this place is because they can't control the people on it and it drives them nuts.
October 17, 2025 at 11:16 PM
The reason they're coming after this place is because they can't control the people on it and it drives them nuts.
Reposted by Brian Shuell
Why Effort Preference Misses the Mark.
It is not about motivation- it’s about biology. @nature.com
Even minor exertion can lead to #PEM.
conta.cc/4mM0B5C
#MECFS #C_Scheibenbogen #Huisarts_Vink
@sunsopeningband.bsky.social @marydimmock.bsky.social @davetuller1.bsky.social @openmedf.bsky.social
It is not about motivation- it’s about biology. @nature.com
Even minor exertion can lead to #PEM.
conta.cc/4mM0B5C
#MECFS #C_Scheibenbogen #Huisarts_Vink
@sunsopeningband.bsky.social @marydimmock.bsky.social @davetuller1.bsky.social @openmedf.bsky.social
October 17, 2025 at 10:22 PM
Why Effort Preference Misses the Mark.
It is not about motivation- it’s about biology. @nature.com
Even minor exertion can lead to #PEM.
conta.cc/4mM0B5C
#MECFS #C_Scheibenbogen #Huisarts_Vink
@sunsopeningband.bsky.social @marydimmock.bsky.social @davetuller1.bsky.social @openmedf.bsky.social
It is not about motivation- it’s about biology. @nature.com
Even minor exertion can lead to #PEM.
conta.cc/4mM0B5C
#MECFS #C_Scheibenbogen #Huisarts_Vink
@sunsopeningband.bsky.social @marydimmock.bsky.social @davetuller1.bsky.social @openmedf.bsky.social
Reposted by Brian Shuell
US Government accounts have arrived on Bluesky.
Block on sight.
Protect your digital space.
Be aware that the DHS account in particular is known to quote dunk on regular people to encourage their followers to harass them.
The detach quote function will come in very handy here…
Block on sight.
Protect your digital space.
Be aware that the DHS account in particular is known to quote dunk on regular people to encourage their followers to harass them.
The detach quote function will come in very handy here…
October 17, 2025 at 11:05 PM
US Government accounts have arrived on Bluesky.
Block on sight.
Protect your digital space.
Be aware that the DHS account in particular is known to quote dunk on regular people to encourage their followers to harass them.
The detach quote function will come in very handy here…
Block on sight.
Protect your digital space.
Be aware that the DHS account in particular is known to quote dunk on regular people to encourage their followers to harass them.
The detach quote function will come in very handy here…
Reposted by Brian Shuell
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
October 17, 2025 at 3:10 PM
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
