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@mediaactivist.comSep 29, 2026, 11:16 AM

If you were moved by my latest op-ed for Freedom News, or George Monbiot's incredible article in The Guardian the other day, you may want to call for NHS staff to actually learn about ME - because very few have ever taken such training. c.org/t7vkGg6BGY #MyalgicEncephalomyelitis #ME #ME/CFS

@thewestonmale.bsky.socialSep 28, 2026, 8:49 AM

@cgatist.bsky.social
@meassociation.org.uk
@actionforme.bsky.social
#prime26 #PRIMEsymposium #pwme #me/cfs #mecfs #MyalgicEncephalomyelitis #buildingcapacity

@nlizaki.bsky.socialSep 28, 2026, 7:00 AM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

Links:

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

@tomkindlon.bsky.socialSep 27, 2026, 4:26 PM

Two researchers have explored how language can be used to tackle epistemic injustice in healthcare for people with ME/CFS. Read more: tinyurl.com/bdnwr8n6

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps

Researchers have proposed two ways language can be used to tackle epistemic injustice in healthcare: Look closely at the words used in healthcare. Identify language that leaves out people's experiences or reinforces unfair assumptions, then work with people with the disease, their families, healthcare professionals, researchers and policymakers to replace it with fairer and more inclusive language Make language part of how unfairness is investigated and taught. When examining why some people are not heard or included in medical knowledge, also consider how everyday terms and labels shape attitudes and decisions. Help students and healthcare staff recognise and question these hidden assumptions. o O 7 Reminder: Epistemic injustice is the harm done to a person which is related to their own knowledge or personal experience. ■% INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942 Wallat and Hille. The American Journal of Bioethics (2026)
@alishawhittam.bsky.socialSep 27, 2026, 9:54 AM

Going to the doctor when you live with ME/CFS can feel overwhelming.

These are a few questions you might want to take with you. 💙

💙 Find more information about living with ME/CFS at alishawhittam.com

#MECFS #MyalgicEncephalomyelitis #SevereME #MEAwareness #ChronicIllness #Disability #CarerSupport

@tomkindlon.bsky.socialSep 27, 2026, 12:18 AM

(Geelong & Hawthorn, Victoria, Australia)

People with ME/CFS sought for treatment trial

impact-trials.deakin.edu.au/trial/tri-me...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

TRI-ME Trial logo TRI-ME Trial Researchers at Deakin University are investigating if a potential new treatment is effective in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Researchers at Deakin University are investigating if a potential new treatment is effective in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This study will assess the effectiveness of the medication in a high-quality, clinical trial. In a recent drug screening program, the medication showed promising potential to address the key elements of ME/CFS by reversing mitochondrial dysfunction – the likely pathway in ME/CFS. The medication works to improve the efficiency of how the body creates energy by promoting specific energy production pathway. Key Points for Participation • There is no cost involved for participants in the trial • Participants can continue on their usual treatments • The trial will be held over 8 weeks and involve a total of 5 sessions • Participants will be randomly allocated to receive either the active medication or placebo If you would like to receive more information or enquire about participating, please visit their website. Ethics approval number: Barwon Health HREC 23/196
@rose-mary-x.bsky.socialSep 26, 2026, 7:23 PM

. @georgemonbiot.bsky.social & @natashadevon.bsky.social discussing #MECFS on LBC earlier.
This clip is from his closing comments, which I thought were very powerful.
Actually, I burst into tears 😭
Thank you both 💙 #MyalgicEncephalomyelitis
#GreatestMEdicalScandal #LongCovid

@paulaknight.bsky.socialSep 26, 2026, 6:52 PM

@georgemonbiot.bsky.social was on top form tallking about ME on @natashadevon.bsky.social
Packed a lot of important info in: Pace Trial, GET harms, benefit cuts, insurance etc. It was like a potted history and didn't mince words about how awful it is.

Listen back! #MEcfs
#MyalgicEncephalomyelitis

@nlizaki.bsky.socialSep 26, 2026, 5:14 PM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

Nevra is currently in the worst ME/CFS crash she has experienced. Her neurological and sensory symptoms have deteriorated severely, alongside major MCAS reactions, CCI symptoms and pain. She now spends almost all of her time in darkness and often needs sunglasses even inside her room.Nevra finally secured an apartment that is mould- free with the help of her brother as the tenant. The landlords don't rent to single females as the society she lives in in Pakistan is rife with gender discrimination.Nevra urgently needs aggressive rest. Instead, she has been forced to use the little energy she has on: * securing housing * landlord negotiations * organising carers * interviewing PAs * contracts and paperwork with and without lawyers, graphic designing * setting up a functioning, accessible home * trying to access medical care She physically cannot keep doing all of this herself.Things have deteriorated further. First, Nevra went 36 hours without any food, water, or medication, and then weeks later, she had to be rushed to the hospital after developing dangerous medication-withdrawal symptoms. She is currently experiencing seizures, and doctors are trying to stabilise her.
@colleensteckel.bsky.socialSep 26, 2026, 1:58 PM

Research about replacing bone marrow to bring in healthy mitochondria.

As #MyalgicEncephalomyelitis & some with #LongCovid deal with malfunctioning mitochondria this may be worth watching.

med.stanford.edu/news/all-new...

@tomkindlon.bsky.socialSep 26, 2026, 1:11 PM

“Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect” By David Tuller
virology.ws/2026/09/26/t...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial By Error: Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect Leave a Comment / By David Tuller / 26 September 2026 By David Tuller, DrPH George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.
@meassociation.org.ukSep 26, 2026, 9:15 AM

Background - The Guardian: Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed:

https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed 

#MyalgicEncephalomyelitis #GeorgeMonbiot

@tomkindlon.bsky.socialSep 26, 2026, 12:24 AM

Information on ME/CFS

meassociation.org.uk/wp-content/u...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

INFORMATION ON ME/CFS FACTS ABOUT ME/CFS ME/CFS is a multisystem disease Involving the brain, muscle, immune and neuroendocrine (hormone producing) systems. ME/CFS is a long-term illness that causes substantial disability Causing an inability to perform everyday activities of daily living (bathing, dressing, cooking, eating etc) ME/CFS affects a person's quality of life People with the disease have a lower quality of life in comparison to other serious conditions Treatment for ME/CFS There is currently no cure or effective treatment for the disease. Pacing, activity and energy management can help some to stabilise symptoms. Prevalence Research estimates around 400,000 people in the UK have ME/CFS-62% increase in previous figures. Some people with Long Covid fit diagnostic criteria for ME/CFS. Severity 75% may be mild/moderate with relapses that may be severe in nature. 25% of people with ME/CFS are severely or very severely affected - needing 24/7 care THE ME ASSOCIATION me Registered Charity Number 801279 Myalgic Encephalomyelitis /Chronic Fatigue Syndrome www.meassociation.org.uk
@irishmecfsassoc.bsky.socialSep 25, 2026, 9:44 PM

Social gatherings in Bray, Cork, Dublin, Kilkenny & Limerick (Irish ME Trust)

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #speirgorm #spéirgorm #speirghorm #spéirghorm

Have a Snack on ME Our next social gatherings will take place in – CORK, LIMERICK. DUBLIN BRAY & KILKENNY. Full details as follows: CORK Barry’s of Douglas, Bar & Restaurant, Douglas, Cork. Wednesday 30th September - Time – 12.00pm (organised by Ashling) LIMERICK The Strand Hotel Ennis Road, Limerick Wednesday 30th September - Time – 12.00pm (organised by Sarah) DUBLIN Groome's Bar & Bistro, Cassidy’s Hotel Upper O’Connell Street, Dublin 1 Wednesday 30th September - Time – 2.00pm (organised by Shell) BRAY Villa Pacis Centre (on grounds of Queen of Peace Church in Bray) Vevay Road, Bray, A98VP93. Friday 2nd October - Time – 12.30pm (organised by Audrey) KILKENNY Bistro Bar, Kilkenny River Court Hotel The Bridge John Street, Kilkenny. Thursday 8th October - Time – 2.00pm (organised by Ailish) All are Welcome If anybody is interested in helping to arrange further locations, please contact info@imet.ie
@circadianstatic.bsky.socialSep 25, 2026, 8:57 PM

heya, currently raising funds to deal with treatment for being #intersex while having #ME/CFS ( #myalgicencephalomyelitis ) - I got enough from it to finish my #hormone panel this morning - I just now have to wait on results. #gofundme #reshare #chronicillness

gofund.me/c229cd2c1

@tomkindlon.bsky.socialSep 25, 2026, 2:36 PM

2/
Also: You can't trust personal testimonials about lightning process: The whole process involves training/hypnotising a patient to say they are well and not mention their symptoms or limitations

#MEcfs #CFS #ChronicFatigueSyndrome #PwME #MyalgicEncephalomyelitis

@meadvocatesireland.bsky.socialSep 25, 2026, 7:57 AM

Coverage on George Monbiot’s article on @natashadevon.bsky.social ‘s radio show on LBC Saturday, 26 Sept, from 6:00-9:00pm UK time
#ME
#MyalgicEncephalomyelitis

@litsadremousis.bsky.socialSep 25, 2026, 12:01 AM

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...

@lilacfire.bsky.socialSep 25, 2026, 12:01 AM

From talking to many w/ ME like me & #LongCovid, it's the same illness. But medical profession can't seem to grasp that or want to admit it's wrong to compartmentalize.
Frustrating to have Long Covid patients treated seriously while ME sufferers patronized. #MyalgicEncephalomyelitis #ME
#bcpoli

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