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Ella Inez

@ellainez.bsky.social
101 followers 230 following 34 posts

Waiting to see the end of the greatest MEdical scandal of the century

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Reposted by Ella Inez
Adam @abrokenbattery.bsky.social · 13h
“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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ME Association @meassociation.org.uk · 02/10/2026
The American Psychological Association: The hidden harms of medical gaslighting   Read more: www.apa.org/monitor/2026/10/harms-m…  #pwME #MECFS #LongCovid #Fibromyalgia #Endometriosis #MedicalGaslighting
IMAGE DESCRIPTION: Photo of a woman sat in bed, with her head in her hands. 
Wording reads: The American Psychological Association: The hidden harm of medical gaslighting. 
MEA logo.
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David Tuller @davetuller1.bsky.social · 02/10/2026
This interview with @georgemonbiot.bsky.social has had almost 5,000 views since I posted it yesterday: www.youtube.com/watch?v=Maae...
youtube.com
Interview with George Monbiot about Guardian column on ME/CFS
YouTube video by David M Tuller
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Adam @abrokenbattery.bsky.social · 01/10/2026
Sad to hear of the death of Dame Esther Rantzen yesterday. After writing about her daughter’s ME in the 90s, she received 4,000 letters from distressed patients and their families. She described treatment resembling methods “used in mediaeval days to punish witches”.
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Leah McElrath @leahmcelrath.bsky.social · 24/09/2026
I live with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. MECFS imposes severe energy limitations that interfere with any form of exertion, including mental. At its most severe, it feels as though your body is shutting down, like a living death. Thank you, @georgemonbiot.bsky.social.
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Adam @abrokenbattery.bsky.social · 24/09/2026
Essential reading. New Guardian article from George Monbiot. 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.'
Of course, as there is no effective treatment, it’s a difficult situation for doctors as well as patients. But even worse than no solutions is false solutions, and a dangerous, gaslighting, even punitive approach to a terrible disease.

Across the decades, millions of people have been neglected, dismissed and mistreated, and still it goes on. 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.
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Billy Hanlon @bhanlon15.bsky.social · 21/09/2026
Health Rising: IVO-21 – A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? 'It’s remarkable to see two senior intramural mitochondrial researchers, Dr. Chung & Dr. Hwang, working at an NIH Institute that has essentially ignored ME/CFS now digging into it' www.healthrising.org/blog/2026/09...
healthrising.org
IVO-21 - A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? - Health Rising
Could a new mitochondrial drug called IVO-21 be the answer to the energy problems in ME/CFS, fibromyalgia, and long COVID?
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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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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
This is an incredibly exciting development for the #LongCovid field, and shows what is possible when trials choose innovative treatment candidates and are designed with patient expertise! 7/ bsky.app/profile/biov...
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Billy Hanlon @bhanlon15.bsky.social · 13/09/2026
Health Rising: 'WASF3: A Critically Important Process in ME/CFS? Paul Hwang’s Surprising Saga' 'Hwang brought in samples from ME/CFS patients..he & colleagues found significantly increased WASF3 levels and dramatically reduced cytochrome oxidase & MTO1 levels' www.healthrising.org/blog/2026/09...
healthrising.org
WASF3: A Critically Important Process in ME/CFS? Paul Hwang's Surprising Saga - Health Rising
A mitochondrial disrupter called WASF3 could be dysregulating many systems in ME/CFS.
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#MEAction Network @meactnet.bsky.social · 11/09/2026
Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University. Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared! @openmedf.bsky.social
Photo of Ron Davis and Janet Dafoe starting the Symposium. (White elder man and woman sitting in a library on a screen for the meeting)
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Julia Métraux @juliametraux.bsky.social · 06/09/2026
Attitudes that young women are just emotional etc can kill us. Misogyny in medicine in some ways...ruined my quality of life.
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Julia Métraux @juliametraux.bsky.social · 06/09/2026
When I was 18, I developed vasculitis. I was hospitalized for a week, and then was told by a doctor I had anxiety. A year + later I had a life threatening flare (when diagnosed), and as a result I'm on the day-to-day more sick as a result of my chronic illness being disregarded a decade later.
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Ella Inez @ellainez.bsky.social · 05/09/2026
👏🏼👏🏼👏🏼
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Anil van der Zee @anilvanderzee.bsky.social · 21/08/2026
"Not a Patient Advocate. Not Your Silver Lining Porn. Just Desperation." anilvanderzee.com/not-an-advoc... #pwme #myalgicE #millionsmissing #severeME
anilvanderzee.com
Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee
I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopeful...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/08/2026
Michael Sharpe signed this letter-- among its first five signatories! What a distinction!
Signatories

Professor Michael Biggs, Prof of Sociology, U of Oxford
Professor Abhishek Saha, Prof of Mathematics, Queen Mary U of London
Dr Lawrence Patihis, PhD, Psychology, U of Portsmouth, U of Buckingham
Professor Michael Sharpe, Professor Emeritus, U of Oxford
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Renegade Research @renegaderesearch.bsky.social · 13/08/2026
Join us tomorrow! #LongCovid & #pwME patients will share triggers, treatments, remission events, symptom profiles, etc. Over 30 researchers will join including @drmaureenhanson.bsky.social, @sunsopeningband.bsky.social, @resiapretorius.bsky.social, @dbkell.bsky.social, @michaelpelusomd.bsky.social
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valebodi.bsky.social @valebodi.bsky.social · 13/08/2026
Preprint from 🇦🇹 Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in #ME/CFS: a multimodal proof-of-concept MRI study Conclusions These findings provide in vivo evidence of impaired neuro-metabolic and vascular adaptive capacity in ME/CFS, supporting the virtual hypoxia
medrxiv.org
Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood, debilitating multisystem condition. Converging evidence implicates impaired cellular bioenergetics, neuro...
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Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · 08/08/2026
I’m not able to think or write much this Severe ME Awareness Day so here’s an old poem of mine that can do the talking for me. Sending so much love to all those tethered by severe ME. 💙 #ME/CFS #mecfs #Chronicillness #chronicpain #poetry #creativewriting #expressivewriting @meactnet.bsky.social
The background is a photo of crumpled, slept in, white bedding. Over this is a typed poem by Germaine Hypher @craftingapaththroughillness

The poem is called Oh, Songbird.

Stolen on the wing
Shhh, don't sing little bird
Don't sing,
No morning melody nor
Hushabye lullaby,
Lie still, little bird, Lie still while I tie Your hollow legs And feathered reach
To this bed,
With this string
I thee wed,
Unscrew the hinges of your beak,
Don't cry little bird
Don't fly
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Carole Bruce @cabruce.bsky.social · 08/08/2026
#SevereMEDay Many are far too ill to post or look at posts, some friends have died, some of us use scarce energy to try to bring recognition to the millions of us missing from life. #ME can happen to anyone. We need URGENT action now to educate, care and fund research.
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Tom Parsons @tomparsons.bsky.social · 08/08/2026
Today is Severe ME day. I never thought that I could get this sick and be receiving LESS medical care. I never thought following the advice of clinicians could leave me mostly bedbound. I never thought I would lose the whole world this way.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 08/08/2026
Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME.
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ME/CFS Science @mecfsscience.org · 30/07/2026
"There’s often a deep stoicism in those of us who have known lengthy illness: a quiet acceptance of bodily suffering that conceals its true burden. For our own survival, we’ve learnt to normalise feeling unwell. We measure our symptoms not against the healthy body, but against its worst potential."
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Anil van der Zee @anilvanderzee.bsky.social · 10/07/2026
Interesting preliminary study shows that people with #LongCOVID have actual damage to the vagus nerve fibers that normally control the stomach. When they looked at stomach biopsies, they found far fewer nerve fibers, especially the cholinergic (vagal) ones, compared to HC.
ijidonline.com
Vagal cholinergic denervation of the gastric mucosa in Long-COVID-19: in vivo evidence of structural autonomic dysfunction
Since the end of 2019, a coronavirus pandemic (SARS-CoV-2), responsible for severe acute respiratory syndrome, has spread worldwide. This pandemic, due to the spread of SARS-CoV-2, is similar to two p...
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ME/CFS Science @mecfsscience.org · 04/07/2026
1) 🇬🇧 The ME Association is recruiting patients for a study that will test oxygenation and energy recovery in the calf muscles of ME/CFS patients. The study will use non-invasive technologies such as magnetic resonance imaging (MRI) and near-infrared spectroscopy (NIRS).
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ME/CFS Science @mecfsscience.org · 05/07/2026
1) An overview of positive developments in ME/CFS research 👇 The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect and harmonize five biobanks across the continent. bsky.app/profile/mecf...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/07/2026
Griffith University researchers have identified a key immune cell dysfunction in people with ME/CFS. "We found a significant TRPM3-calcium pathway dysfunction in ME/CFS, resulting in impaired calcium entry into mitochondria, a region of cell responsible for energy production" tinyurl.com/3pd8py2k
tinyurl.com
Chain reaction in cells may be driving low energy in ME/CFS patients
Griffith University researchers have identified a key immune cell dysfunction in people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), offering new clues about the condition.
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Tom Kindlon @tomkindlon.bsky.social · 23/06/2026
The Sick Times @thesicktimes.org : "The U.K.’s plan for ME has failed us. Members of parliament must step up." by Nick Benton @nickbenton.bsky.social thesicktimes.org/2026/06/19/t... Screenshot from latest Science for ME weekly update #MEcfs #PwME
The Sick Times The U.K.’s plan for ME has failed us. Members of parliament must step up.
An excellent article by writer Nick Benton who has severe ME/CFS.
"No ring-fenced research funding. No care pathway for the very severe. Hospitalized patients still at risk of malnutrition. What has the delivery plan really changed for people with myalgic encephalomyelitis in the United Kingdom?"
Article | Thread
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Ella Inez @ellainez.bsky.social · 13/06/2026
'suffering, when collectively mediated, becomes a source of resistance, knowledge, and social transformation' ❤️❤️❤️
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Putrino Lab @putrinolab.bsky.social · 13/06/2026
A thread today about Immunoglobulin G (IgG) antibodies to various pathogens and why they seem to be elevated a lot in people with #LongCOVID, #MECFS, chronic #lyme/tick- and vector-borne illnesses and other complex chronic illnesses. First, let's start basic: what is IgG? 1/
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Destiny Sugarbuns @destinysugarbuns.bsky.social · 04/06/2026
The lack of research in an article doesn't necessarily reflect a writer's inability to do good research; it may instead reflect an unusually low effort-preference.
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Tatiana Trifan #FBLC @tatianatrifan.bsky.social · 28/05/2026
"•Long COVID features autoantibodies targeting neural and vascular tissues. •Patients’ IgG shows increased ADCP activity against MED20. •Passive transfer of IgG induces pain and fatigue-like phenotypes in mice. •Mouse pain behavior after IgG transfer correlates with patient-reported chronic pain."
sciencedirect.com
A causal link between autoantibodies and neurological symptoms in long COVID
Acute SARS-CoV-2 infection triggers the de novo production of diverse, functional autoantibodies (AABs) that remain elevated in long COVID (LC), but t…
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Putrino Lab @putrinolab.bsky.social · 28/05/2026
Wonderful day for a new #LongCOVID paper! Thanks to an incredible collaboration with @VirusesImmunity and brilliant work done by @keylas3, we studied the effects of injecting antibodies taken from people with LC into mice compared with what happened www.sciencedirect.com/science/arti... 1/
Graphical abstract of the new paper highlighting the following key concepts:
• Long COVID features autoantibodies targeting neural and
vascular tissues
• Patients’ IgG shows increased ADCP activity against MED20
• Passive transfer of IgG induces pain and fatigue-like
phenotypes in mice
• Mouse pain behavior after IgG transfer correlates with patient-reported chronic pain
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Simon McGrath @simonmcg.bsky.social · 12/05/2026
DNA sequencing study to help pinpoint biology of ME gets £4.7m The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really driving the disease. And will probably be…
mecfsresearchreview.me
DNA sequencing study to help pinpoint biology of ME gets £4.7m
The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really driving the disease. And will probably be the biggest study of its kind for any disease. The UK government has committed £4.7 million directly to ME/CFS research…
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Adam @abrokenbattery.bsky.social · 12/05/2026
Today is #MEAwarenessDay ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century.
George Monbiot and Carol Monaghan quotes
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Michael Stingl @neurostingl.bsky.social · 23/04/2026
Ein spannender Artikel über die mögliche Rolle von Gefäßkompressionssyndromen bei orthostatischer Dysregulation - gerade bei #Hypermobilität und damit in Überlappung auch #MECFS ein relevantes Thema, leider noch mit vielen offenen Fragen. www.mdpi.com/2227-9059/14...
mdpi.com
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Eric Topol @erictopol.bsky.social · 24/03/2026
Transferring IgG antibodies from patients with #LongCovid to mice recapitulates many symptoms www.sciencedirect.com/science/arti...
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valebodi.bsky.social @valebodi.bsky.social · 16/03/2026
This study provides in vivo evidence of white matter neuroinflammation in #ME/CFS, characterised by cerebral edema (reduced NII-HR), cellular infiltration (reduced NII-RF) and axonal reorganisation (increased NII-FF). This suggests NII-derived indices may serve as sensitive biomarkers for
onlinelibrary.wiley.com
Evidence of White Matter Neuroinflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Diffusion‐Based Neuroinflammation Imaging Study
Diffusion-based neuroinflammation imaging (NII) reveals widespread white matter abnormalities in ME/CFS patients, undetected by conventional DTI. NII metrics associate with mental health, disability ...
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Mirja Nicolas @privilegienschreck.bsky.social · 14/03/2026
Es ist einfach ermüdend, wenn man die Geschichte von ME/CFS kennt und weiß, wie auch Medienstrategien an der Verharmlosung beteiligt waren. Lest gerne nochmal dazu den Artikel (2024) von George Monbiot: 3/3
theguardian.com
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot
The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot
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Hypervisible @hypervisible.blacksky.app · 06/03/2026
Make it stick.
futurism.com
People Are Calling Meta Ray-Bans "Pervert Glasses"
On Bluesky, users quickly embraced the term "pervert glasses" to refer to Meta's Ray Ban smart glasses, following a shocking investigation.
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Binita Kane @binitakane.bsky.social · 03/03/2026
Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵 youtu.be/pk00btt7CVs?...
youtu.be
Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast
YouTube video by HLTH Compliance
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Ella Inez @ellainez.bsky.social · 02/03/2026
Some NHS GPs are still recommending graded exercise therapy to ME patients. It just happened to me. The guidelines changed in 2021. What can we do about this?
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Long Covid Advocacy @longcovidadvoc.com · 28/02/2026
Some good news! We do (🤞) seem to be at a turning point of decent research being funded for #ME See S4ME forum post for more details: 🖇️ tinyurl.com/msbft7e6
Graphic with a dark blue background and pink and cyan accents titled "PROGRESS WORTH CELEBRATING." Large pink text reads "GOOD NEWS: Major breakthrough for ME/CFS research" with a party popper emoji. The main text announces that DISCOVER-ME, co-led by Prof Carding, has received €7.5 million in EU funding. It involves 21 international partners studying 2,000 patients to deliver biologically validated disease classification, actionable biomarkers, AI-driven stratification, and foundations for precision trials and drug repurposing in ME/CFS. The Long Covid Advocacy logo is at the bottom right.
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Cort Johnson @cortjohnson.bsky.social · 28/02/2026
Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS www.healthrising.org/blog/2026/02...
healthrising.org
Is the OMF's ME/CFS BioQuest Study the Study We've All Been Waiting For? - Health Rising
The Open Medicine Foundation's huge Bioquest project has the potential to transform ME/CFS patients experience with doctors, dramatically enhance research and get drug companies finally interested in ...
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Adam @abrokenbattery.bsky.social · 27/02/2026
Update: Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH. www.gofundme.com/f/severemerg...
Update on Savannah from her GoFundMe
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Adam @abrokenbattery.bsky.social · 21/02/2026
🧬 Phase 1 of whole-genome sequencing for ME and Long Covid is now funded for 2 years - building on DecodeME. It’s the world’s largest study of its kind for any disease, but it’s a £20m project and much more support is needed. I’ve just donated: www.actionforme.org.uk/research-cam...
Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announce the launch of Sequence ME & Long Covid – the world’s largest long-read, whole-genome study of any disease.

Sequence ME & Long Covid is a £20 million research initiative designed to explore the root causes of ME and Long Covid using long-read, whole-genome sequencing.

Partners, The Schmidt Initiative for Long COVID and CODA have provided $200,000 and $50,000, respectively, to contribute towards the cost of this first phase.
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Adam @abrokenbattery.bsky.social · 16/02/2026
Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18. Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die. archive.ph/J3Xv3
Screenshot of the article from the Times
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