Sign in

S.Jones

@seastarsal.bsky.social
625 followers 1.5K following 91 posts

Chronically enraged that I've had ME/CFS since 1992. cfsgraphics.com

PostsRepliesMedia
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 13/10/2026
Vindara Health, a new telehealth platform focused on care delivery for people with Long Covid, ME/CFS, POTS, MCAS, etc, is actively recruiting clinicians. We are currently seeing patients and have a long list of patients waiting to be seen. www.vindarahealth.com/careers
vindarahealth.com
Careers | Vindara Health
Open roles at Vindara Health, a remote telehealth clinic for complex chronic illness led by Dr. David Kaufman.
188
Reposted by S.Jones
Irish ME/CFS Association @irishmecfsassoc.bsky.social · 09/10/2026
We have given €54,000 from our research fund to the Solve ME/CFS Initiative over the years. #mecfs #pwme #cfs
042
S.Jones @seastarsal.bsky.social · 07/10/2026
In 2024, a meta-analysis of 13 studies found that 51% of people with long Covid met the established criteria for ME/CFS. (Journal of Infection, Dec. 2024) ME/CFS is a horrible disease that ruins lives.
Shows a train conductor with a head resembling the head from The Scream by Munch. The conductor is saying "Welcome Aboard” to people with long COVID. The train is labeled the ME/CFS Express, and through the train’s windows, suffering people can be seen. The first long-COVID passenger being helped onto the train has a suitcase labeled "one way". A crowd of people labeled long Covid, including a child, is waiting to board the train.
072
Reposted by S.Jones
pehpunkt.bsky.social @pehpunkt.bsky.social · 03/10/2026
... #jederTagMECFS #MECFS #LongCovid #MEAwareness
Bleistiftzeichnung eines Zimmers mit zwei Fenstern, darin links ein Bett und rechts ein Tisch mit Stuhl. Draussen sieht man ein Haus und einen belaubten Baum, der sich im Wind biegt. Am Himmel fliegen einige Vögel. Wilde Bleistiftlinien deuten Wind und Wolken an.
Auf dem Bett liegt eine schlappe Person auf dem Rücken, die Arme über dem Bauch verschränkt.
211536
Reposted by S.Jones
David Tuller @davetuller1.bsky.social · 01/10/2026
Here's my interview with Guardian columnist @georgemonbiot.bsky.social about his recent column on the awful treatment of people with ME/CFS: virology.ws/2026/10/01/t...
virology.ws
Trial By Error: Interview with George Monbiot on Recent Guardian Column | Virology Blog
By David Tuller, DrPH As I mentioned last week, George Monbiot, the British investigative journalist and longtime contributor to The Guardian, published a c ...
26418
Reposted by S.Jones
Mike Honey @mikehoney.bsky.social · 27/09/2026
I took a look at the data on #ME/CFS for Australia. Hospital separations for "G04 Encephalitis, myelitis and encephalomyelitis" have been growing strongly since around 2015. Growth slowed in the early years of the pandemic and then accelerated from 2023 onwards.
48737
Reposted by S.Jones
Rebecca Joy Bingham @rebeccabingham.bsky.social · 24/09/2026
From the film “Unrest”: In Denmark, a severely ill girl is removed from her family by police and placed involuntarily in a psychiatric hospital. Authorities believed that her parents were reinforcing or causing her illness rather than caring for a child with severe ME/CFS. youtu.be/XOpyLTyVxco?...
youtu.be
UNREST Feature Documentary (With Captions and Multilingual Subtitles)
YouTube video by Unrest Film
083
Reposted by S.Jones
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925431731
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 26/09/2026
Did I say land of the free? Eyes wide open folks. We are descending in Fascist/Nazi hell. Just because you feel safe right now, how do you think you will tomorrow, next week, next month. They are on the warpath, locking down before the so-called election. www.nytimes.com/2026/09/22/u...
nytimes.com
How Trump Has Cracked Down on Dissent Since the Killing of Charlie Kirk
The White House has labeled critics terrorists, attributed violence to a left-wing conspiracy and investigated unions, nonprofits and other groups in a battle over free speech.
041
Reposted by S.Jones
Litsa Dremousis @litsadremousis.bsky.social · 25/09/2026
Thanks so much to the great science writer George Monbiot @georgemonbiot.bsky.social for once again covering the ongoing systemic neglect and abuse of patients w/ #MyalgicEncephalomyelitis Essential reading for #pwME, #MedSky, and allies: www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
07231
Reposted by S.Jones
Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(1/3) I would not repeat years of very severe #MECFS again for billions of dollars. Not just because of the ongoing difficulties, but also the risk of not surviving. Just one single day would wipe the smug and doubt off the faces of those who disbelieve. Just one single day, but there is a catch.
24416
Reposted by S.Jones
Patient-Led Research Collaborative @patientled.bsky.social · 05/08/2026
"As someone living with Long COVID, I know first hand the power of finding relief. I found two off-label meds in this guide that took me from bed-bound to mostly housebound, which gave me the will to keep living and fighting for better care for patients. I believe we all have the right to try these medications as I did, and your support makes that potential possible."
— Charlie McCone, PLRC co-lead
162
Reposted by S.Jones
valebodi.bsky.social @valebodi.bsky.social · 08/06/2026
New peer reviewed research confirms people with ME/CFS have a consistent faulty cellular structure A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( #ME/CFS), providing long-awaited validation www.eurekalert.org/news-release...
eurekalert.org
New research confirms people with ME/CFS have a consistent faulty cellular structure
A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), providing long-awaited validation for hundreds of thousands of Australi...
12510
Reposted by S.Jones
Anil van der Zee @anilvanderzee.bsky.social · 02/06/2026
1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME
612452
Reposted by S.Jones
Esther @elhopkins.bsky.social · 23/05/2026
onlinelibrary.wiley.com/doi/10.1002/...
onlinelibrary.wiley.com
Brain Microstructural Alterations in Children Post‐COVID‐19 Infection Through VBM, SBM, and Structural Covariance Network Analysis
Background Children represent a particularly vulnerable group to the long-term consequences of COVID-19 due to their ongoing neurodevelopment. This study aimed to identify transient and persistent s...
162
Reposted by S.Jones
Billy Hanlon @bhanlon15.bsky.social · 20/05/2026
Ithaca College (2018): 'Tireless Work on Chronic Fatigue Syndrome' 'IC professor Betsy Keller is among the leaders of a comprehensive new study of the misunderstood disease' www.ithaca.edu/news/tireles...
ithaca.edu
Tireless Work on Chronic Fatigue Syndrome | Ithaca College
IC professor Betsy Keller is among the leaders of a comprehensive new study of the misunderstood disease.
052
Reposted by S.Jones
Ezra S @ezra.zone · 12/05/2026
It's ME/CFS Awareness Day. A great day to watch Unrest, get mad, and realize that this is a common medical condition with virtually no support www.youtube.com/watch?v=XOpy...
youtube.com
UNREST Feature Documentary (With Captions and Multilingual Subtitles)
YouTube video by Unrest Film
14119
Reposted by S.Jones
Danielle Beckman @daniellebeckman.bsky.social · 09/05/2026
Today, hundreds of people went to the streets in over 40 cities (!!!) in Germany to demand better support for Myalgic encephalomyelitis (ME/CFS) patients. One of the reasons I chose Germany as my new home. Very proud of you my German friends. #LiegendDemo #MECFS
1124367
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 08/05/2026
He is such a murderous fucking idiot. Makes me want to puke. His poor son. Cannot even imagine how he is being treated medically and emotionally. RFK is part of the Trump murder squad
031
Reposted by S.Jones
Liz Burlingame @lizmeactga.bsky.social · 22/04/2026
It’s been 5 yrs today since Rivka Solomon was featured on PBS NewsHour, raising awareness about ME/CFS & Long COVID. Advocates like Rivka have worked tirelessly to bring awareness to people newly diagnosed w/ Long COVID, & related diseases. We are #StillSickStillFighting www.pbs.org/newshour/bri...
pbs.org
Rivka Solomon, Disability Advocate
The emergence of long COVID has drawn attention to poorly understood chronic illnesses. This week, over a thousand people living with those diseases signed up to meet virtually with members of Congres...
03814
Reposted by S.Jones
Tom Kindlon @tomkindlon.bsky.social · 22/04/2026
Making Invisible Illnesses Visible: Recognizing and Responding to Infection Associated Chronic Conditions dx.doi.org/10.1093/cid/... Screenshot from latest Science for ME weekly update #LongCovid #MEcfs
Making Invisible Illnesses Visible: Recognizing and Responding to Infection Associated Chronic Conditions — Iskander and Haridopolos
From the Office of the U.S. Surgeon General. "Grounds for optimism in this emerging field include calls from public health leaders to break down silos between infectious and chronic conditions, new data and emphasis on IACCI from the Centers for Disease Control and Prevention"
0103
Reposted by S.Jones
Eric Feigl-Ding @drericding.bsky.social · 18/04/2026
BAD GRADES & POOR ATTENTION SPAN: School-aged children with long COVID had more than double the risk of decreased academic performance. www.cidrap.umn.edu/covid-19/stu...
cidrap.umn.edu
Study links long COVID in kids to worse grades, attention, and social life
13362168
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 16/04/2026
An important read and totally on the mark. Sadly. Scarily. My big reservation/concern. "The Nazis were defeated". Yeah, but the cost was WWII and tens of millions of lives. And my fear is that registering and voting may not do the trick. mitchthelawyer.substack.com/p/a-historia...
mitchthelawyer.substack.com
A Historian Spent 30 Years Interviewing Nazis. He Identified 12 Warning Signs of Fascism. All 12 Are Present in Trump's America Right Now.
The evidence is not opinion. It is public record. And it demands your attention before November.
052
Reposted by S.Jones
Kate Schapira: "Well Put & Generalizable" @kateschapira.bsky.social · 08/04/2026
Just signed this for my beloved friend Hollis
1114
Reposted by S.Jones
#MEAction Network @meactnet.bsky.social · 25/03/2026
ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that. Today advocates are asking Congress to change that - join us! It takes 5 minutes: ow.ly/2hKo50YySls #MECFS #MEAwarenessHour Solve M.E. #MEAction Network
Text-based graphic: "Me/CFS Advocacy Week 2025 Federal Advocacy Day ME/CFS has no FDA-approved treatments. Ask your  Senators and Representatives to sign onto Dear Colleague letters in support of our community appropriations requests- we need medical research funding."
04223
S.Jones @seastarsal.bsky.social · 15/03/2026
According to a recent NIH study, 4.5% of the people who have had COVID will meet the diagnostic criteria for ME/CFS. Patients often experience extreme suffering and a drastic reduction in their quality of life. www.nih.gov/news-events/... #LongCovidAwarenessDay #LongCovidAwarenessMonth
Shows a train conductor with a head resembling the head from The Scream by Munch. The conductor is saying "Welcome Aboard” to people with long COVID. The train is labeled the ME/CFS Express, and through the train’s windows, suffering people can be seen. The first long-COVID passenger being helped onto the train has a suitcase labeled "one way". A crowd of people labeled long Covid, including a child, is waiting to board the train.
02816
Reposted by S.Jones
#MEAction Network @meactnet.bsky.social · 11/03/2026
ICYMI! #MECFS affects millions but is NOT part of standard clinical training. Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce ME/CFS questions into qualifying national medical exams. Register: ow.ly/Tqet50YoPG7
Announcement for ME/CFS Advocacy Week 2026 from March 23 to 27 with upward arrows and a megaphone graphic. Megaphone in top corner. Solve M.E. logo and MEAction logo under each arrow.
02416
Reposted by S.Jones
Patient-Led Research Collaborative @patientled.bsky.social · 11/03/2026
We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1
rthm.com
Long COVID Treatment Guide
An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...
8314190
S.Jones @seastarsal.bsky.social · 05/03/2026
March is Long COVID Awareness Month. Please offer support to your stricken friends. @thesicktimes.org @guitarmoog.bsky.social @exceedhergrasp1.bsky.social @chromatowski.bsky.social @emilyrj.bsky.social @thecovidinfoguy.bsky.social @davetuller1.bsky.social @mileswgriffis.bsky.social
Shows a doctor on the edge of a forest trying to put out a small COVID fire. There is a large fire in the forest behind the doctor labeled "long Covid".  A frightened deer runs out of the forest to escape the fire. The deer is labeled ME/CFS. The cartoon shows that while Covid is somewhat less prevalent (though still a dangerous threat), the huge problems of Long Covid and ME/CFS still loom.
03822
Reposted by S.Jones
Long Covid UK @longcoviduk.bsky.social · 05/03/2026
PART 1 - What is Long Covid? Professor Danny Altmann, Immunologist at Imperial College London and Trustee of Long Covid Support, explains what Long Covid is. #LongCovid #LongCovidAwareness #ProfessorDannyAltmann #LongCovidSupport
22817
Reposted by S.Jones
Adam @abrokenbattery.bsky.social · 25/02/2026
NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.
63310
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 14/02/2026
Cannot make this shit up. "During an appearance on Theo Von’s podcast yesterday, Kennedy described why he was determined to keep going to in-person addiction meetings during the pandemic:“I’m not scared of a germ. You know, I used to snort cocaine off of toilet seats.” Our beloved Sec HHS. OMG.
121
S.Jones @seastarsal.bsky.social · 13/02/2026
Today would be a great day to register to vote!
010
S.Jones @seastarsal.bsky.social · 08/02/2026
I recently spoke with two doctors who graduated from the University of Washington School of Medicine. One recognized the name ME/CFS but knew nothing about it. The other doctor had never heard of it. Do you think the U.of W is failing its doctors by not teaching about ME/CFS?
4163
Reposted by S.Jones
BenB 🇺🇦 @benborges.xyz · 01/02/2026
Sweden readies one of its largest military aid packages for Ukraine with air defenses, Saab radars and drones Sweden is preparing one of its largest security assistance packages for Ukraine, including air defense systems and Saab-made radars, along with investments in Ukraine’...
uawire.org
Sweden readies one of its largest military aid packages for Ukraine with air defenses, Saab radars and drones
Sweden is preparing one of its largest security assistance packages for Ukraine, including air defense systems and Saab-made radars, along with investments in Ukraine’s defense-industrial base such as additional electronic warfare systems and drones, including deep-strike capabilities, the Defense Ministry’s press service said Sunday, February 1. Defense Minister Mykhailo Fedorov discussed the package with Swedish Defense Minister Pal Jonson, according to the statement. The Swedish side is preparing a large-scale aid bundle featuring air defenses and Saab radars, plus support for Ukraine’s defense industry — additional electronic warfare systems and drones, including deep strike. Fedorov thanked Sweden for its consistent support and new investments in Ukraine’s defense, and the two sides zeroed in on several priority areas. - Strengthening air defenses and countering ballistic threats: Ukraine and Sweden are working on additional contributions to the PURL initiative to equip Ukrainian forces with critical weapons, including systems to counter ballistic missiles. - Defense innovation partnership: The Brave1 cluster is discussing a joint Brave-Sweden program. Through co-financing, the program would channel grant funding to defense companies and allow frontline testing of innovative solutions. - Launching joint defense-tech production: Both sides are moving to accelerate joint production of Ukrainian secure solutions on Swedish territory. They also discussed aviation, including the potential supply of Gripen fighter jets and the transfer of Meteor missiles, which are key to countering aircraft that carry guided aerial bombs. Earlier, Sweden signaled readiness to support peace in Ukraine after a ceasefire by providing fighter jets and helping de-mine the Black Sea. The country will also continue training Ukrainian military officers for the Armed Forces. Sweden also contributed an additional €63.8 million to support Ukraine’s energy sector.
0268
Reposted by S.Jones
Chronic Illness Humor @chronicillness.bsky.social · 31/01/2026
1 - guy lifting his head up from the pillow  

2 - guy starting to get out from under the covers  

3 - guy grabbing his slippers while sitting on bed   

4 - guy putting on a shirt   

5 - guy just staring at his feet 

6 - partially lays back down
210820
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 23/01/2026
Still doubting our spiral into fascism? Still don't believe in big brother/ICE etc. Take a look at this: techcrunch.com/2025/10/16/a...
techcrunch.com
Amazon's Ring to partner with Flock, a network of AI cameras used by ICE, feds, and police | TechCrunch
Agencies that use Flock can request that Ring doorbell users share footage to help with "evidence collection and investigative work."
043
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 29/12/2025
Read this at least twice and better, 5 times. This is not alarmist, melodramatic, conspiracy thinking---this is our reality. Highlights are mine. Share this with your family and friends and social media before it is too late. anchorlightpublications.substack.com/p/my-final-p...
anchorlightpublications.substack.com
My Final Political Post - The Republican Strategy, Key Players, Timeline, Likely Outcome, and How We Should Respond
What started with a single question about the proliferation of anti-vax conspiracy theories, resulted in a life-changing discussion with A.I. about our future. My future.
131
Reposted by S.Jones
Chronic Illness Humor @chronicillness.bsky.social · 24/12/2025
@thepotspostman
@thePotsPostman - 

half of chronic illness is trying to act like everything is fine. the other half is wishing someone noticed when it isn't.
010718
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 24/12/2025
Trump is the most corrupt, money hungry, mafioso, skilled at threats and extortion, that has ever set foot in DC. Read this article and realize the magnitude of conflict. No wonder the rich get richer. Sickening. www.nytimes.com/interactive/...
nytimes.com
Hundreds of Big Post-Election Donors Have Benefited From Trump’s Return to Office
Well into his second term, the president and his allies have continued aggressively raising money. Many donors have interests before his administration, The Times found.
011
Reposted by S.Jones
Tom Kindlon @tomkindlon.bsky.social · 23/12/2025
Great to see this sympathetic overview article in the LA Times www.latimes.com/doctors-scie... It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically. Note: it doesn't focus on any particular news #MEcfs #CFS #PwME
Image of a man with his hand to his face

Chronic fatigue syndrome

Kevin Famuyiro
By Kevin Famuyiro
Senior Content Strategist
Contact
Dec. 20, 2025 5:21 AM PT


16 min
Click here to listen to this article

Key Facts
ME/CFS is characterized by Post-Exertional Malaise (PEM), where symptoms worsen after minimal activity.
The condition is classified as a neurological disease often triggered by viral infections or immune dysfunction.
Diagnosis is a process of exclusion, requiring a thorough medical exam to rule out mimickers.
68042
Reposted by S.Jones
Clay Bennett @claybennett.bsky.social · 11/12/2025
12/12/2025- Pirate of the Caribbean www.timesfreepress.com/news/2025/de...
414580
S.Jones @seastarsal.bsky.social · 10/12/2025
@kristinwrites.bsky.social @exceedhergrasp1.bsky.social @binitakane.bsky.social @kaufmanmd.bsky.social @chromatowski.bsky.social The mistreatment of ME/CFS patients isn’t a minor oversight — it’s one of modern medicine’s greatest failures. Millions harmed. Decades wasted.
Shows a woman with ME/CFS propped up in bed with her cat. There is a brown blob on her head labeled “stigma”. A jet plane is flying overhead, dropping brown blobs onto the woman’s head.  The jet is labeled “Medical Profession”. In large letters, the cartoon says “Enough Already”.
1177
Reposted by S.Jones
David Kaufman @kaufmanmd.bsky.social · 09/12/2025
The next step has begun. Ratchet up the fear, attack those that disagree, arrest, detain. This is Adolf, Vladimir, Xi....this is what we have become. And it is only just starting. Give it three months and you will not recognize this country. It was never going to stop with "immigrants".
041
Reposted by S.Jones
C.H. Romatowski @romatowski.bsky.social · 28/11/2025
Beautiful @thesicktimes.org essay on how to be a friend to your friends who are affected by Long Covid—and why you should. Def worth a few minutes of your time.
48332
Reposted by S.Jones
sarah boothby @swastrosarah.bsky.social · 22/11/2025
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM. "= Minimum age of 18 years = Physician-confirmed diagnosis of ME/CFS = Ability to read and answer the questionnaire in German or English = Voluntary consent to participate" www.soscisurvey.de/V-PEM-AQ_eng...
soscisurvey.de
Questionnaire | page 1
62316
Reposted by S.Jones
PhillyPhile215 @phillyphile215.bsky.social · 24/11/2025
Please share with people with #LongCOVID in your life. It would be incredible to hit 1000 in the next week! (They are already over 700 since this post!)
11214
Reposted by S.Jones
WWTF @wwtf.at · 03/11/2025
Not an ME/CFS researcher? Perfect. That's exactly who we need. The ME/CFS Fellowship 2026 seeks fresh perspectives from a wide range of life science researchers including biochemists, cell biologists, geneticists, neuroscientists, physiologists., etc. #MECFS #LongCOVID #AcademicSky 🧪
Recruitment graphic for ME/CFS Fellowship Programme 2026 with headline 'ME/CFS Research Needs YOU' and text 'Now Open' against modern geometric design. WE&ME Foundation and WWTF branding.
33623
Reposted by S.Jones
Kristin Houlihan, Writer @kristinwrites.bsky.social · 23/11/2025
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know. substack.com/home/post/p-...
substack.com
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
45926