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Posts tagged #pwme

Abstract 
CC-BY-NC 4.0 International license
 . 
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic multisystem 
disease characterized by profound fatigue, post-exertional malaise, cognitive impairment, and 
autonomic dysfunction. Its pathophysiology is incompletely understood and likely involves complex 
interactions between immune, autonomic, and metabolic dysregulation. Despite features with potential 
relevance for anesthesia and perioperative care, evidence to guide anesthetic management in 
individuals with ME/CFS remains limited. We therefore performed a retrospective matched-pair 
analysis to generate clinical data on perioperative responses and identify areas for future research. 
Methods: We conducted a retrospective matched-pair analysis at a single tertiary center. All patients 
with ME/CFS undergoing general anesthesia from 2015 to 2026 were identified using ICD-10-GM 
codes (G93.3 and U09.9) with additional manual verification and matched 1:1 to controls for 
comparison. Patients with confounding diagnoses or American Society of Anesthesiologists physical 
status above III were excluded. The analysis focused on intraoperative hemodynamic parameters, 
including baseline, post-induction, median, and lowest recorded systolic blood pressure and heart rate, 
as well as early postoperative outcomes in the post-anesthesia care unit (PACU), including maximum 
pain scores and requirement for rescue analgesia. 
Results: Out of 189 individuals identified through ICD-10 codes, 15 matched pairs were included after 
application of exclusion criteria. ME/CFS patients exhibited lower lowest recorded intraoperative 
systolic blood pressure (90.0 [82.5-95.0] mmHg in ME/CFS vs 100.0 [90.0-110.0] mmHg in controls, p 
= 0.044) as well as lower lowest heart rate (50 [40.0-57.5] bpm in ME/CFS vs 60 [50.0-65.0] bpm in 
controls, p = 0.012). Vasopressor use and fluid administration did not differ, and no episodes of severe 
hypotension or peri…

Abstract CC-BY-NC 4.0 International license . Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic multisystem disease characterized by profound fatigue, post-exertional malaise, cognitive impairment, and autonomic dysfunction. Its pathophysiology is incompletely understood and likely involves complex interactions between immune, autonomic, and metabolic dysregulation. Despite features with potential relevance for anesthesia and perioperative care, evidence to guide anesthetic management in individuals with ME/CFS remains limited. We therefore performed a retrospective matched-pair analysis to generate clinical data on perioperative responses and identify areas for future research. Methods: We conducted a retrospective matched-pair analysis at a single tertiary center. All patients with ME/CFS undergoing general anesthesia from 2015 to 2026 were identified using ICD-10-GM codes (G93.3 and U09.9) with additional manual verification and matched 1:1 to controls for comparison. Patients with confounding diagnoses or American Society of Anesthesiologists physical status above III were excluded. The analysis focused on intraoperative hemodynamic parameters, including baseline, post-induction, median, and lowest recorded systolic blood pressure and heart rate, as well as early postoperative outcomes in the post-anesthesia care unit (PACU), including maximum pain scores and requirement for rescue analgesia. Results: Out of 189 individuals identified through ICD-10 codes, 15 matched pairs were included after application of exclusion criteria. ME/CFS patients exhibited lower lowest recorded intraoperative systolic blood pressure (90.0 [82.5-95.0] mmHg in ME/CFS vs 100.0 [90.0-110.0] mmHg in controls, p = 0.044) as well as lower lowest heart rate (50 [40.0-57.5] bpm in ME/CFS vs 60 [50.0-65.0] bpm in controls, p = 0.012). Vasopressor use and fluid administration did not differ, and no episodes of severe hypotension or peri…

Good to see some empirical research in this area

Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue
syndrome undergoing general anesthesia: a retrospective matched-pair study

www.medrxiv.org/content/10.6...

#MEcfs #PwME

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"Professor Chalder Downgrades Definition of 'Recovery'" by David Tuller

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME

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A super hard trip again. Soph's gradual worsening means the risk of hospital looms larger than ever. And yet we know this would make her worse.

06/04/2026 A relentless spiral.

#pwME #severeME #MECFS

padpadpadpad.netlify.app/posts/caring....

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Recognizing
and assisting
students
with CFS
by Dr. Kenneth Friedman and Rosemary Underhill

Photo of a young person

Most students with ME/CFS fall behind in their schoolwork due to cognitive problems and fatigue.

Recognizing and assisting students with CFS by Dr. Kenneth Friedman and Rosemary Underhill Photo of a young person Most students with ME/CFS fall behind in their schoolwork due to cognitive problems and fatigue.

"Recognizing & assisting students with CFS" by Drs Kenneth Friedman & Rosemary Underhill

I came across this 3-page 2007 article when doing a clear out. I'm not going to reread it now but as I recall, I thought it was quite good at the time

www.njcfsa.org/wp-content/u...

#MEcfs #PwME #CFS

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Video

Cheer Up, Smile, Nertz!

Music by Wesley & Mischa Portnoff, lyrics by Norman Anthony in 1931.

(What does "nertz" mean? Nonsense or nuts or a polite way at the time of saying B.S!)

#historyrepeatsitself #clown #smile #vintagemusic #pwme
#VintageSongs #funnysong #PwME #makesmesmile

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Promotional graphic for the StudyME Registry. The background shows blurred researchers working in a lab. Text on a white banner at the bottom reads: “Do you want to help speed up the research process? Now you can! Join the OMF StudyME Registry: www.omf.ngo/studyme.”

Promotional graphic for the StudyME Registry. The background shows blurred researchers working in a lab. Text on a white banner at the bottom reads: “Do you want to help speed up the research process? Now you can! Join the OMF StudyME Registry: www.omf.ngo/studyme.”

🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas.

👉 Sign up today: https://www.omf.ngo/studyme/

#UnitedForME #MECFSresearch #POTS #pwME #pwLC

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#PwME #MECFS #LongCovid #disability

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💯

Same goes for our govt. who are clearly acting in bad faith.

Every time they'd need to back up their words with actions, they've chosen not to.

They say #pwME dying from starvation in an NHS hospital must becom "never events".
But they refused to get involved when Savannah was being starved.

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... contribuyendo de manera decisiva a impulsar la inclusión de esta enfermedad en los sistemas sanitarios y en los futuros modelos de financiación en toda Europa.
#MyalgicEncephalomyelitis #PwME #Salud #DiaMundialDeLaSalud
europeanmealliance.org/news-Q22026-...

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Post image

Following a series of successful social media posts last year, we have developed an A to Z poster showing the alphabet of common symptoms, experiences, and comorbidities of ME/CFS - showing that it's a lot more than just feeling 'tired'.

#pwME #MECFS #MyalgicEncephalomyelitis #MyalgicEncephalopathy

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Trial by Error by David Tuller: "Claims Built on Fraudulent Trials Should Be Ignored"

virology.ws/2026/04/01/t...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #ME #MyalgicE

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#MEAction - "Frail and Furious" Millions Missing 2026
#MEAction has posted information about their Millions Missing campaign for May 2026. Their toolkit (Google doc) includes information about online actions as well as in-person Millions Missing events in the USA (Washington, DC) and UK (location TBD). Two storytelling workshops are scheduled in April to help people with ME/CFS and Long Covid share their personal stories.
Announcement | Video | Thread

#MEAction - "Frail and Furious" Millions Missing 2026 #MEAction has posted information about their Millions Missing campaign for May 2026. Their toolkit (Google doc) includes information about online actions as well as in-person Millions Missing events in the USA (Washington, DC) and UK (location TBD). Two storytelling workshops are scheduled in April to help people with ME/CFS and Long Covid share their personal stories. Announcement | Video | Thread

MEAction - "Frail and Furious" Millions Missing 2026

docs.google.com/document/d/1...

www.meaction.net/millionsmiss...

www.youtube.com/watch?v=T3am...

Screenshot from latest Science for ME weekly update

#millionsmissing #MEcfs #PwME #ME #MyalgicE @meactnet.bsky.social @meactionuk.bsky.social

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ME Research UK enewsletter November 2025 New funding award: Immune exhaustion in ME/CFS ME Research UK is delighted to have awarded funding to Dr Andrea Polli and Prof. Lode Godderis at Vrije Universiteit Brussel and Katholieke Universiteit ...

@meresearchuk.bsky.social ME Research UK– e-newsletter March 2026
#ME/CFS #pwME

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ME-pasientene fortjener retningslinjer som treffer. Pasientene fortjener retningslinjer som treffer.

#pwME in Norway 🇳🇴 deserve correct, up to date and non harmful guidelines
Guidelines have a major impact on how patients are treated in the healthcare system. If the basis is inaccurate or misleading, the consequence can be incorrect treatment and increased burden for an already vulnerable patient

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Five years ago a rheumatologist said I didn’t have fibromyalgia. Today my doctor says I am ticking all the boxes for it. Also started the process of being evaluated for POTS. Being an advocate for one’s health is exhausting. #NESvoid #pwME #MECFS

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I tried my best in spring2020 to warn ppl trying to jump back into exercising but couldn’t understand why they were “healthy” but could not run anymore. Their lists of ailments read like a copy/paste of #MyalgicEncephalomyelitis symptoms & I’d say “You DON’T want to end up like me!”
#LC #pwME #viral

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Preview
Millions Missing & why I've been missing from arts on Kauai & my life in general... - Donia I haven’t sent out a newsletter in over a year because after the intense amount of work & energy I put into the Kauai Art Tour I became very ill. We live in a society that constantly tells us: Go! Go!...

Yup. 71 yrs later &we’re still diagnosed w/ modern versions of “hysteria” (severe somatic pain disorder)😒

I wrote this in 2016 (& tried to warn ppl online not to overexert in spring 2020 when I read their laundry list of mysterious symptoms “after” Covid💔)
#pwME #SevereME #LongCovid #chronicillness

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Merci beaucoup @voxem.bsky.social @comprendrelem.bsky.social 💙💙💙🙏🏻💙💙💙🫂💙💙💙
#ME/CFS #EM #pwME
🏷️ @chloedecanson.bsky.social @cyruxime.bsky.social @thonigilles.bsky.social @johannmargulies.bsky.social @millionsmissingfr.bsky.social

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Red t-shirts featuring 'Frail & Furious #MillionsMissing' on the front and '#MEAction logo on the back. Text: Tees now available! Available for immediate shipping! With or without logo on the back. Multiple colors, styles, and sizes! Order now.

Red t-shirts featuring 'Frail & Furious #MillionsMissing' on the front and '#MEAction logo on the back. Text: Tees now available! Available for immediate shipping! With or without logo on the back. Multiple colors, styles, and sizes! Order now.

#MillionsMissing 2026 #FrailAndFurious tees are now available! https://www.bonfire.com/store/meaction-1/

We have lots of styles and colors to choose from!

You can choose tees with a logo on the back on ones without.

A portion of your purchase helps support our work!

#pwME #MECFS #LongCovid

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Myalgic Encephalomyelitis is a fully disabling life changing chronic illness. #MEAction #frailandfurious #mecfs #pwme #disabilityjustice #fundhealthcare

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I am turning 70 in October and am planning to retire from UC Berkeley at the end of this year. That means this crowdfunding campaign will be the last one for this iteration of Trial By Error, since it will cover my position from July 1 through December 31. (My next steps are not yet clear; I could continue the project in some form. I just don't know.)

I launched Trial By Error in October, 2015, with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID. 

Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID.

In the last 11 years, I have written many hundreds of blog posts, instigated dozens of corrections in published papers, posted interviews with experts in the field, written multiple articles and commentaries for both mainstream and peer-reviewed publications, and presented at conferences and other venues in almost a dozen countries. My work has played a major role in the ongoing shift in how ME/CFS is view, and Long COVID along with it. I expect to continue in the same vein through the end of this year.

(I have raised the campaign goal slightly because costs of employment (especially for health insurance) have increased in recent years, and the fund has run slightly behind. I am committed to continuing to work until the end of December, whether or not the full goal is reached.)

I am turning 70 in October and am planning to retire from UC Berkeley at the end of this year. That means this crowdfunding campaign will be the last one for this iteration of Trial By Error, since it will cover my position from July 1 through December 31. (My next steps are not yet clear; I could continue the project in some form. I just don't know.) I launched Trial By Error in October, 2015, with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID. Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID. In the last 11 years, I have written many hundreds of blog posts, instigated dozens of corrections in published papers, posted interviews with experts in the field, written multiple articles and commentaries for both mainstream and peer-reviewed publications, and presented at conferences and other venues in almost a dozen countries. My work has played a major role in the ongoing shift in how ME/CFS is view, and Long COVID along with it. I expect to continue in the same vein through the end of this year. (I have raised the campaign goal slightly because costs of employment (especially for health insurance) have increased in recent years, and the fund has run slightly behind. I am committed to continuing to work until the end of December, whether or not the full goal is reached.)

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project/49720

#MEcfs #LongCovid #PwME

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Image of lots of envelopes flying away

Image of lots of envelopes flying away

ME Research UK:

March's ME Research UK e-newsletter has been sent to supporters and is also available on our website - tinyurl.com/3etkznxw

#mecfs #pwme #cfs

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Preview
Encéphalomyélite myalgique : une lutte à bout de force L’encéphalomyélite myalgique touche au moins 450 000 personnes en France qui subissent directement le déni des autorités sanitaires, le sexisme du (…)

CQFD: Encéphalomyélite myalgique : une lutte à bout de force

Article about raising ME/CFS awareness, related to the February 7 Marseille rally held by @voxem.bsky.social collective.

cqfd-journal.org/Encephalomye...

Google translation
cqfd--journal-org.translate.goog/Encephalomye...

#mecfs #pwme

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@lucibee.bsky.social
In fact that process of #pwME being the gaslit testbed of malign medical practice can be documented right back to 1955. Read what Dr Melvin Ramsay wrote about it at the time:
www.amazon.co.uk/Myalgic-Ence...
@meassociation.org.uk paid to save this landmark doc for the ages!.

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My house is the dirtiest it had ever been and finally called the cleaning service instead of waiting for foreve to get health better. I hope benzos work today for sleep and this exertion don't make things worse.Sigh! #pwme

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Excellent spot! Thanks @lucibee.bsky.social
Puts into a nutshell all that I learned from #pwME while working for 24 years at the @meassociation.org.uk, who in my view always were excellent advocates for the cause, despite a few blips along the way.
#me/cfs #MyalgicEncephalomyelitis #LongCovid

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Anybody else have an oh-shit-I’m-masking-around-the-people-who-love-me-&-need-to-know-how-sick-I-am moment?

‘Cause wow that sucked & has taken a couple of days of having to be honest w/myself about it that haven’t been at all fun.

#pwme
#pwlc
Or anybody out in the #neisvoid ?

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ME Advocates Ireland - advice for Occupational Therapists
ME advocates in Ireland have created and shared advice and tips for Occupational Therapists working with people who have ME/CFS. We link direct to their website.

(Thank you to Tom Kindlon for flagging this guide!)



Guidance for Occupational Therapists

ME Advocates Ireland - advice for Occupational Therapists ME advocates in Ireland have created and shared advice and tips for Occupational Therapists working with people who have ME/CFS. We link direct to their website. (Thank you to Tom Kindlon for flagging this guide!) Guidance for Occupational Therapists

ME Advocates Ireland - advice for Occupational Therapists

meadvocatesireland.blogspot.com/2026/01/occu...

Screenshot from latest Chronic Living Therapy @chronicliving123.bsky.social newsletter

#MyalgicEncephalomyelitis #PwME @lammasleaves.bsky.social

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Photo of the late Kurt Cobain in front of a Jenny Holzer installation on the marquee of an empty theater at 233 W 41st St, 7/22/93

Photo of the late Kurt Cobain in front of a Jenny Holzer installation on the marquee of an empty theater at 233 W 41st St, 7/22/93

Happy Easter only to those who still miss Kurt Cobain, his songs, his honesty and his flawed humanity and all #pwME and those who truly care for us

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I want to venture out into the garden today on Easter, find an egg, open it up, and find my life waiting for me in there.  On pause.  Swallow it whole and then do anything I want.  Anything.  I just want to picture it and go, my body firing into action.  Follow the white rabbit!

#mecfs #pwME

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