iiinova — where your digital self keeps evolving

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Adam @abrokenbattery.bsky.social · 28/09/2026

“We’ve had wasted decades in which huge numbers of patients have been abused, mistreated and their very horrible condition made even worse by medicine.” George Monbiot talking about the PACE trial, graded exercise therapy (GET) and CBT as treatments for #MECFS.

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Adam @abrokenbattery.bsky.social · 27/09/2026

“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.

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Elke Hausmann @drelke.bsky.social · 24/09/2026

Thank you @georgemonbiot.bsky.social for an article that really gets to the heart of what is going for people with #ME and #LongCovid and how we are being treated, by the #NHS, by politics, by the media (with notable exceptions in all areas) 1/3 www.theguardian.com/commentisfre...

To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with ME/CFS about their recent experiences of treatment. I was immediately inundated with horrifying testimonies. "I've just been completely abandoned"; "a 10-year waiting list for treatment"; "we've given up seeking medical support"; "stuck in limbo";
"I just felt utterly unheard, invalidated".
• I've
been sent hundreds of shocking and heart-rending accounts.

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Adam @abrokenbattery.bsky.social · 23/09/2026

Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.

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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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Manuel Ruiz-Pablos @manruipa.bsky.social · 15/09/2026

🔴 Fatigue, brain fog & PEM in Long COVID: a new Phase 2 trial with bezisterim points again to neuroinflammation and the ERK–NF-κB–TNF-α axis. I review the results, limitations and how it compares with LDN/metformin: manruipa.substack.com/p/bezisterim... #LongCOVID #MECFS

manruipa.substack.com

Bezisterim in Long COVID: a new approach to fatigue, brain fog and PEM

A new Phase 2 trial suggests that targeting inflammatory signalling in the brain may help fatigue, cognitive dysfunction and post-exertional malaise in some people with Long COVID

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Solve M.E. @solveme.bsky.social · 16/09/2026

Big news! BioVie announced positive results from the ADDRESS-LC trial assessing the potential impact of the drug bezisterim on cognitive impairment/brain fog and fatigue in people with #LongCovid. 🧵

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Bill Grueskin @bgrueskin.bsky.social · 15/09/2026

There are 535 members of Congress. Total all of their stock transactions since January 2025, and that sum (22,300) still won’t match how many trades Trump has made in the same period (28,700). www.bloomberg.com/graphics/202...

bloomberg.com

Trump Made 29,000 Securities Trades, More Than All of Congress

Donald Trump made nearly 29,000 securities trades in 17 months — more than every member of Congress combined. The stock-purchasing ban he’s pushing would leave him exempt

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Tom Kindlon @tomkindlon.bsky.social · 15/09/2026

🧵 I thought this 7-page introductory piece written by a medical doctor was very good "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by @drmichaelabauer.bsky.social storage.e.jimdo.com/file/1caec72... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/

"Understanding ME/CFS An Introduction to a Complex Illness"
Dr. med. Michaela Bauer · August 2026

Image of a female reading a book entitled "ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
with 5 thought bubbles showing what she is thinking about

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Tom Kindlon @tomkindlon.bsky.social · 23/08/2026

🧵 ME Research UK: Careers, relationships, family life, hobbies, basic tasks – PEM can tear through it all. The sheer symptom burden and ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations e.g. Mind (mind.org.uk) #MEcfs #PwME 1/

Impact of post-exertional malaise (PEM) in ME/CFS
"...Disbelief in PEM has cost me my marriage, some friendships, connection with some family members, because being unable to do things without further harming my fragile health has been understood as laziness, being selfish, lacking interest."
Response from ME Research UK Symptom Saturday PEM Survey INFORM. INFLUENCE. INVEST.
allh RESOArH SCO36942

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Adam @abrokenbattery.bsky.social · 22/08/2026

Katharina spoke about her 15 yr old daughter Lina, who has severe #MECFS and needs 24-hour care at a Liegendemo in Nuremberg Germany. She can no longer speak or get out of bed. Earlier this year, her weight fell below 25kg because she could tolerate so little food.

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David Coletto @davidcoletto.bsky.social · 21/08/2026

Canadians aren’t giving up on public health care. They want it fixed. 85% say universal care based on need, not income, is a core Canadian value. 80% believe the public system can meet Canadians’ needs with more investment. abacusdata.ca/canadians-w...

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C.H. Romatowski @chromatowski.bsky.social · 22/08/2026

Stanford is hosting its annual conference on the molecular basis of ME/CFS and there will be one day (Sept 11) open to the public. Register here: stanford.zoom.us/webinar/regi...

Facebook post from Ronald W. Davis
6h

2026 Community Symposium on the Molecular Basis of ME/CFS

I am pleased to announce that this year's 10th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS will include a virtual Community Symposium again this year, in which patients, caregivers, doctors, and any other interested parties are invited to attend. The closed portion of the meeting will be held September 8 - 10, and the last day, September 11, will be open to the public. It will be held on zoom starting at 8 am PST.

*You must register to be sent a link to gain entrance to the meeting.* The link you are sent can only be used by the email you register with, and cannot be shared.
There is limited capacity so please be sure to register ahead. The agenda will be announced soon. I am excited to be hosting this again, and look forward to seeing you there!
Here is the registration link:

stanford.zoom.us
Welcome! You are invited to join a webinar: Community Symposium on the Molecular Basis of ME/CFS. Af...

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Timothy Snyder @timothysnyder.bsky.social · 26/07/2026

Lecture 2: "A World of Empire" Totalitarianism did not emerge from nowhere. It was a response particularly to empires that Europeans had created. Free online course: "Hitler and Stalin Today" Hosted by the Munk School @utoronto.ca Full lecture: youtu.be/PDOGV5Gl6SE?...

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Kelly @broadwaybabyto.bsky.social · 26/07/2026

When disability happens to you, you won’t be able to just “try harder”. The social supports you think magically appear? They won’t show up. The medical system will let you down. Friends & family will abandon you. You will realize disability advocates were right all along.

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sarah boothby @swastrosarah.bsky.social · 23/07/2026

I hate #ME, and everything that goes with it, because of the wasted potential it represents. Maeve was born a scholar, knew the syllabus for all her exam subjects better than her teachers, and they had confidence in her (sometimes too much; she was only a child). The stupidity of British medicine

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ME/CFS San Diego @mecfssd.bsky.social · 24/07/2026

@meactnet.bsky.social Emergency Department Project: The project is now funded & launching to study why people with ME/CFS and long COVID seek emergency care in the US & their experiences in the ED/ER. Recruitment will open soon for diagnosed people who have visited an ED/ER in the past 10 years.

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Kelly @broadwaybabyto.bsky.social · 17/07/2026

American elected officials are admonishing Canada for the wildfires. When California was on fire, Canada sent planes to help out. A Canadian firefighter just died helping fight a blaze in the US. Canada pitches in, it doesn’t lay blame or make threats. Perhaps America should return the favour.

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Carl Quintanilla @carlquintanilla.bsky.social · 16/07/2026

6.55% @apnews.com apnews.com/article/inte...

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jorybak.bsky.social @jorybak.bsky.social · 16/07/2026

The NICE guidelines state that Lightning Process should NOT be offered to ME/CFS patients. Many LC patients with fatigue meet the criteria for a ME/CFS dx. What a waste of money and resources. Couldn’t it be invested into a medical study that could actually help patients? It’s 2026! Do better.

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Ezra S @ezra.zone · 13/07/2026

mcmaster university is doing a trial of the lightning process. it's 2026. what are we even doing. clinicaltrials.gov/study/NCT076...

clinicaltrials.gov

ClinicalTrials.gov

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The Sick Times @thesicktimes.org · 16/07/2026

Some FDA-approved GLP-1s are being studied in clinical trials for the disease, but their results aren’t available yet. Experts caution against using experimental peptides for #LongCOVID. thesicktimes.org/2026/07/14/e...

A graphic shows three vials of peptides on a graph paper and jet black background. The glass vials have a sticker on them that says, "RESEARCH PURPOSE ONLY: NOT FOR HUMAN CONSUMPTION". The text reads, “The Sick Times. Experimental peptides are being advertised for Long COVID. But the evidence is trailing behind. By by Jamie Ducharme.”

Peptides, short chains of amino acids that can have drug-like effects, are booming in popularity — even though many have not been thoroughly studied in humans and are not Food and Drug Administration–approved.

Despite the lack of research, some medical clinics and providers are advertising peptides as Long COVID therapies, and they are often hyped up on social media.

GLP-1 medications are also peptides. Some people with Long COVID are “microdosing” them in hopes of treating their symptoms.

One clinical trial is assessing the GLP-1 tirzepatide for the disease, while the National Institutes of Health RECOVER program will launch a trial on semaglutide later this year. A third clinical trial is assessing larazotide, a synthetic peptide, for Long COVID in children.

Research on peptides and Long COVID is ongoing. Experts say it’s safest to wait for those results, or at least to use peptides under the care of medical professionals.

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Carole Bruce @cabruce.bsky.social · 16/07/2026

Open letter to The Royal College of Psychiatrists sent by Mark Harper and others on 13 July. #ME

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Robin Wigglesworth @robinwigglesworth.ft.com · 16/07/2026

Finance often gets forgotten or ignored by many historians and history buffs. The reality is that it's often shaped the course of history just as much as the course of history has shaped finance. A prime example (sorry) is how the UK got its first prime minister. www.youtube.com/watch?v=anGO...

youtube.com

How a financial crash created Britain’s first prime minister | The Story of Money

YouTube video by The Story of Money Podcast | Financial Times

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ME/CFS San Diego @mecfssd.bsky.social · 14/07/2026

Scott Hugo, 25+ patient advocates & @meactnet.bsky.social filed an ethics complaint over WIRED's Long COVID article. Learn why the Long COVID & ME/CFS communities are concerned, read the complaint & sign the petition: www.mecfssandiego.com/mecfs-advoca...

Advocacy alert about WIRED's Long COVID article, urging support for Scott Hugo and #MEAction's ethics complaint with calls to read the complaint and sign a petition.

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#MEAction Network @meactnet.bsky.social · 14/07/2026

New article with advocacy efforts being taken to bring attention to Wired’s failure of journalistic ethics in its recent article about Long COVID. Scott Hugo, has filed a complaint to request a formal ethics investigation. MEAction has signed in support. ow.ly/FYJg50Znqbf

Stack of magazines with headline "#MEAction supports complaint filed about harmful Wired article" Quote from Scott Hugo underneath headline: “We are not requesting your organization to resolve legitimate scientific disagreement, or to pronounce on the mechanisms of Long COVID itself; instead, we are requesting that you assess whether the article and Wired’s subsequent response complied with journalistic standards for accuracy, context, fairness, transparency, and accountability.”

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Joe Segal - Create Positive Solidarity @joesegal.bsky.social · 13/07/2026

Data centers should be charged 2-3x the rate for electricity, and residents should be charged greatly reduced rates wherever they exist. Data centers must be zoned outside of all residential and public commerce areas and subject to all environmental impact report requirements & regulations.

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Brian Fog @uselesspriest.bsky.social · 14/07/2026

RIP Bridget O'Shea

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Carole Bruce @cabruce.bsky.social · 14/07/2026

With 50 million monthly downloads and 17 million YouTube subscribers, The Diary of a CEO far outstrips the circulation figures of most newspapers. It would be fantastic if someone could go on this show and tell the real story of #ME Someone articulate, charismatic, informed. Who?

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Carole Bruce @cabruce.bsky.social · 14/07/2026

@georgemonbiot.bsky.social Wondering if you had the time or inclination to go on Diary of a CEO and pitch for ME patients. The behavioural expert here seems to lack the current knowledge or horrific backstory.

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Ramin Nasibov @nasibov.me · 10/07/2026

What my brain does with passwords as soon as I create them:

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Kelly @broadwaybabyto.bsky.social · 10/07/2026

Disability is not a vacation. It’s a 24/7 job You’re forced into legislated poverty You have to endure ableism, abandonment and constant gaslighting You live with pain & suffering that would send most folks to the hospital. You fight for medical care, social supports & dignity. It’s not easy.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 10/07/2026

"Many... have permanently worsened their baseline by over exertion. The best thing you can do early is good old fashioned convalescence..... I wouldn't sugarcoat it, poor management early on is where the worst damage is done."

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 10/07/2026

"You have to prioritize, and disregard things that aren't mission-critical" LOVE this

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 09/07/2026

Every time I work on the pacing data I'm just so bowled over by the quality and depth of everyone's insight. "Pacing is distributing tasks across time and energy" is baller

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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 09/07/2026

An Irish national newspaper journalist is looking to do a piece to highlight that the people severely affected with ME may not receive the health & social services they need. If you are available to talk, private message us or email us at info at irishmecfs dot org #MEcfs #PwME #CFS

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Kookoosint @ask70.bsky.social · 08/07/2026

America elected him twice. He is America. Own it.

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dubsuzanne.bsky.social @dubsuzanne.bsky.social · 08/07/2026

Why? Why do you expect someone from NATO or anywhere else to speak up about Trump? He's your problem & only USA citizens can sort this out! The rest of the world have their own problems so why should we take on yours? Call out your own politicians, media etc. for appeasing Trump! Save yourselves!

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Lené Colbert @lenecolbert.bsky.social · 08/07/2026

Thing is, it’s America’s responsibility to speak up, to act. It’s not the responsibility of other nations to take that first step. Our cowardice &, on the part of many, desire to use that broken evil man for the accumulation of wealth & power, underlines our untrustworthiness. It’s not just Trump.

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Carl Quintanilla @carlquintanilla.bsky.social · 06/07/2026

“.. The Trump family’s earnings, experts said, have moved him into an echelon of enrichment more associated with strongmen in Russia and Turkey.” @nytimes.com www.nytimes.com/2026/07/02/w...

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Adam @abrokenbattery.bsky.social · 04/07/2026

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.

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