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Alex

@admiringbog.bsky.social
844 followers 751 following 1.3K posts

person with ME/CFS professional slug

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Reposted by Alex
ME/CFS San Diego @mecfssd.bsky.social · 02/10/2026
@scienceillustrated.bsky.social & @decodemestudy.bsky.social : Chris Ponting on 8 ME/CFS genetic signals (mislabeled as genetic cause) scienceillustrated.com/health/peopl...
scienceillustrated.com
People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness
Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those ...
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Elly Brosius, MS @ellybrosius.bsky.social · 01/10/2026
The preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of #MECFS and #LongCovid" now has over 100 votes in the Popular Preprints of the Decade Award voting. You can vote for it and others daily until 11/30/2026. @renegaderesearch.bsky.social
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Ginger Billie @gingerbillie.bsky.social · 01/10/2026
David M Tuller doing god’s work for #mecfs and #longcovid like always. Interview with @georgemonbiot.bsky.social youtu.be/MaaeQ7crLz4?...
youtu.be
Interview with George Monbiot about Guardian column on ME/CFS
YouTube video by David M Tuller
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Lane🔻 @lane1312.bsky.social · 01/10/2026
With moderate ME/Cfs, if I can do a job it’s likely my symptoms will get worse for doing too much physically or mentally. Though, I need a job to live. There’s no disability support for me in Texas. I don’t know what to do anymore. I’m so angry and frustrated
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Adam @abrokenbattery.bsky.social · 01/10/2026
“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.
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Explicitly Anti-Vaxx @bellamyj.blacksky.app · 01/10/2026
Choosing to ignore the awful words of the World's Worst People has brought so much peace to my life.
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Miles W. Griffis @mileswgriffis.bsky.social · 29/09/2026
"John Richard Green, who is imprisoned in Texas, wrote that, w/ Long COVID, his health is “more messed up than the floor of a New York cab...Now I am bedbound, sick, and all alone." Vital feature by @octoberk.bsky.social about the disease's invisibility in prison. thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
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Michael @shevekuk.bsky.social · 29/09/2026
Ridiculously there's bugger all to zero compulsory training in the NHS about ME/CFS. If it were, say, MS, people would be in uproar. So I'd appreciate it if you sign this futile attempt at chang- I mean, this petition c.org/t8D7hZ9Lh5
c.org
Sign the Petition
Make ME/CFS learning mandatory for NHS staff
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Alex @admiringbog.bsky.social · 29/09/2026
For decades, people with #ME/CFS have been reporting the flu as a trigger.
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Alex @admiringbog.bsky.social · 29/09/2026
Being able to eat without it causing pain: 10/10
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C.H. Romatowski @chromatowski.bsky.social · 28/09/2026
It’s not a story that anyone wants to hear but in February 2018 I caught a friend’s sore throat. While he recovered fully, I just kept declining, and by June I was 99% bedbound. Eight years later, that’s where I remain. We desperately need better defenses against all respiratory viruses.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 27/09/2026
Just listened to this full interview & it’s fantastic. @georgemonbiot.bsky.social doesn’t mince words, reminding us the #GreatestMEdicalScandal of the century is not just about neglect, it’s abuse by the medical system & complicity from all of society. Full interview (9 mins): youtu.be/H2rRf_f2hJs
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sarah boothby @swastrosarah.bsky.social · 26/09/2026
"the reality that when trust in one’s own body has been shattered, life will always have a hum of background fear. Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear." @naomiwhitt.bsky.social 🙏🏼🫂😔 #ME #LongCovidME
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Kendra "Gloom is My Beat" Pierre-Louis @kendrawrites.com · 27/09/2026
So I still mask like 90 % of the time. And it's funny how often people assume I mask because I either had a really gnarly covid infection or I'm disabled and neither is true. I'm kind of trying to avoid both (with no shade to the disability community)
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026
I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?
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C.H. Romatowski @chromatowski.bsky.social · 25/09/2026
Examples of researchers talking about how many people volunteering for studies as healthy controls turn out to have Long Covid:
Tweet from Putrino Lab @PutrinoLab

Of all the "COVID-recovered" people who are kindly emailing us to participate in our study (meaning they had COVID >12 weeks ago and feel recovered), only about 1 in 5 are actually passing our screening questionnaire. The rest actually have persistent symptoms. #LongCOVID

1:18 PM • 2/23/22 From EarthScreenshot from CNN Health

Putrino said they had the most difficult time, in some respects, recruiting people to their control groups. "We had all of these people saying, 'I had Covid, and I'm fully recovered. Can I be in your study?' "

Upon further questioning, however, Putrino says they'd tell him things that would suggest they weren't really back to normal. "They'd say, I'm fully recovered. I just don't go to the gym anymore.' " Why don't you go to the gym anymore? 'Well, when I exercise, I feel really terrible," he said. Disabling fatigue after exercise is a common symptom of long Covid called post-exertional malaise.

He says that ultimately, about 50% of participants who were screened to be part of the control group couldn't be included because of continuing symptoms.Tweet from Alba Azola, MD
@AzolaAlba

For those doing LC research... around you having trouble finding controls? We are experiencing that most of our "HC" volunteers, when further assessed, end up having post COVID symptoms

9:56 AM • 8/8/24 From Earth • 6.2K Views
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Karla Monterroso @karlaliliana.bsky.social · 25/09/2026
Sincerely believe autoimmune disease would be so much more understood if a) they weren’t so populated by women. B) if medical research on women hadn’t only started in 1993!
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C.H. Romatowski @chromatowski.bsky.social · 24/09/2026
I am so desperate for someone to publish their data on how many of “healthy control” volunteers screened positive for Long Covid. I’ve been hearing of this problem for years, I think it would be so valuable to document it.
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#MEAction Network @meactnet.bsky.social · 24/09/2026
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry." #MECFS #pwME
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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
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Michael Olesen @molesen.bsky.social · 24/09/2026
I was looking at some data today and saw further evidence of the immune damage from COVID. Look at how much bigger influenza seasons are from the area where I pulled the data.
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Alex @admiringbog.bsky.social · 24/09/2026
Mentions a brain retraining study with supposedly good results. We get accused a lot of being prejudiced against this concept, but I always feel the opposite—would love a goofy psych program to fix me in 4 weeks.
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Alex @admiringbog.bsky.social · 24/09/2026
Whaaaat
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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026
Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
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0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0
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Miles W. Griffis @mileswgriffis.bsky.social · 22/09/2026
Over 1,700 people have signed a petition calling on McMaster University to review a Long COVID clinical trial evaluating a pseudoscientific "mind body" program. "It seems like we're in the dark ages," the petition author told @spichaksimon.bsky.social thesicktimes.org/2026/09/22/p...
thesicktimes.org
People with Long COVID demand pause of McMaster University clinical trial - The Sick Times
The trial, run by researchers at McMaster University in Canada, is testing the Lightning Process, a pseudoscientific mind-body program that outside experts have heavily criticized.
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Mark Ungrin @mark-ungrin.bsky.social · 22/09/2026
The aspect of #immigration that no one wants to talk about is *why* rates increased so much over the last few years. #longCOVID We need them, or the wheels fall off. An official COVID strategy of "don't look up" means we have to fill the gaps somehow, or there's no way to hide the body count.
ctvnews.ca
Poll suggests Alberta referendum wording may overstate support for some proposals
A new poll suggests the wording of some Alberta referendum questions may make government proposals appear more popular than their individual parts.
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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Katy B @katybrc.bsky.social · 17/09/2026
It's hard to explain quite how infuriating & heartbreaking it is to see #pwME who were born after I first became ill with #ME, 39 years ago, still having to advocate for themselves, still barely holding onto their lives, still having to fight for their basic rights
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Alex @admiringbog.bsky.social · 16/09/2026
“It feels to me like the entirely apocryphal story about Bono. This claims that he once announced from the stage: ‘Every time I clap my hands, a child in Africa dies.’ Whereupon someone in the audience shouted, ‘Well, fucking stop doing it then.’” George Monbiot
open.substack.com
COVID is disabling young women, not Tiktok
“Sickfluencers” are merely symptoms of a mass disabling event
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victoria @vashetc.blacksky.app · 15/09/2026
I've been filing FOIA's for info re: gov. AI use for SNAP & medicaid benefits. Agencies are refusing to turn over records. Wisconsin DHS told me my request would "Significantly impair DHS’s ability to prevent, detect, investigate, fraud, waste, abuse involving public benefit programs ...”. I'm LIVID
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Dr Noor Bari @njbbari3.bsky.social · 15/09/2026
Student enrolment… So, what are you studying? Airborne diseases… Looks at my respie… Tick, tick, tick “I think I’d wear a mask if I studied that too…”
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valebodi.bsky.social @valebodi.bsky.social · 15/09/2026
A ln important call & statement advocating for a nuanced, respectful, and factually appropriate attitude towards people with #MECFS by @bettinagrande.bsky.social
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Alex @admiringbog.bsky.social · 15/09/2026
This article talks about the lack of good treatment options of endometriosis and somehow lands on psychology as the solution instead of FUNDING. Endometriosis is severely underfunded. FUND THE RESEARCH
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Alex @admiringbog.bsky.social · 15/09/2026
Ooh the trial design:
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/09/2026
Dr. Janet Mullington and her team released a paper on their investigation of sleep electroencephalographic microstructures. The team studied these microstructures in the context of non-restorative sleep and daytime fatigue in #MECFS and #LongCOVID. ow.ly/W6EE50ZNXq5
ow.ly
New Publication: Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID - Open Medicine Foundation
New research from OMF's Computational Research Center finds measurable differences in sleep EEG microstructures in people with Long COVID and ME/CFS. Join OMF Journal Club on September 29 to go deeper.
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The Vertlartnic @thev.bsky.social · 15/09/2026
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
A young woman with chronic health conditions
Headline:
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
Story by Mal Evolent and Pippy Notnice

Photo from Adobe
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Dr Noor Bari @njbbari3.bsky.social · 15/09/2026
Good grief. Apparently infection prevention is possible. We just have to teach people how to do it, and then do it. I need to lie down.
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Elke Hausmann @drelke.bsky.social · 15/09/2026
Hope?! #LongCovid #ME
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 15/09/2026
NEW: Novel drug bezisterim might help with fatigue, PEM, and neurological symptoms in Long COVID, according to preliminary results BioVie shared today. These are early findings that will need more review, but it's exciting to see a positive trial result for once! More @thesicktimes.org:
thesicktimes.org
Bezisterim may help with some Long COVID symptoms, drug’s developer reports in early trial results - The Sick Times
While the phase 2 clinical trial results, shared by BioVie in a webinar on Tuesday, have yet to be peer-reviewed, investigators say they can inform a confirmatory phase 3 trial.
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Alex @admiringbog.bsky.social · 15/09/2026
They’re not saying this but it sounds like this drug treats the ME/CFS subtype of LC: “The novel drug bezisterim may help improve fatigue, post-exertional malaise, and neurological symptoms in people with Long COVID”
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Alex @admiringbog.bsky.social · 15/09/2026
I think this attitude often stems from thinking there’s nothing they can do to help us anyway, so what does it matter, which is incorrect. The information is out there! #medsky
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Plague Poems @plaguepoems.bsky.social · 14/09/2026
As the Ebola outbreak in DR Congo continues the number of cases has passed 7,200, and the number of deaths is nearly 3,500, and the amount of attention most of the world is devoting to this outbreak remains almost zero.
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Alex @admiringbog.bsky.social · 15/09/2026
I’m not surprised at all by all the barriers to rest reported here but it’s always hard to read what people go through with this illness.
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Alex @admiringbog.bsky.social · 15/09/2026
I was recently in the ER for IIH and multiple doctors asked me if I had any other conditions. I told them I had #ME/CFS. None of them knew what those letters stood for. It’s a common condition.
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Litsa Dremousis @litsadremousis.bsky.social · 15/09/2026
Mayo Clinic and ME Action recently announced they’re working on new emergency room guidelines for people w/ #MyalgicEncephalomyelitis and #LongCovid. We’re so badly mistreated in ERs that many of us stop going. That’s tens of millions of us. But sure, give The Pitt another award. #Emmys
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Alex @admiringbog.bsky.social · 15/09/2026
I’m obsessed with not being able to lie down flat. I see a picture of a cat lying down and just think: must be nice. #IIH
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🪱𝔼𝕟𝕠𝕔𝕙🪱 @oddoblivion.bsky.social · 14/09/2026
If you almost die from cancer in your 20’s you can spend your 30’s feeling 80 years old.
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gwen 🌶️👹 @gwenpepperoni.myatproto.social · 14/09/2026
today really driving home how much Hollywood loves to toss people over cliffs in wheelchairs
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