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@covidchronicles.bsky.socialSep 27, 2026, 2:40 PM

Day 1479—Nursing a PEM crash and this exchange from "Inside Britain’s Plague Nightmare | EP101+102 | The Black Death With Dan Snow" caught my attention.

In the absence of facts, we always fill the gaps. With bullshit. It's evidence-based medicine or bust. Rigueur, esti.

#LongCOVID #MECFS #pwME

November 1348: At the height of the Black Death, people flocked to plague-riddled Canterbury to purchase a pilgrim badge — a medieval ampulla filled with water tinged with the blood of Saint Thomas Becket — in the hope it would help heal them. Historian Dan Snow: "It's desperately sad to think of people going to all this effort to avoid the plague, to try to save themselves, actually might have put themselves in harm's way." Dr Cressida Lang: "Inevitably, but the draw to come here to seek healing and comfort was just so strong."
@covidchronicles.bsky.socialSep 27, 2026, 2:20 PM

BRAIN RETRAINING THERAPY, summarized:

[A false hope gives only false comfort - Gene Brewer]

#LongCOVID #MECFS #pwME

November 1348: At the height of the Black Death, people flocked to plague-riddled Canterbury to purchase a pilgrim badge — a medieval ampulla filled with water tinged with the blood of Saint Thomas Becket — in the hope it would help heal them. Historian Dan Snow: "It's desperately sad to think of people going to all this effort to avoid the plague, to try to save themselves, actually might have put themselves in harm's way." Dr Cressida Lang: "Inevitably, but the draw to come here to seek healing and comfort was just so strong."
@katybrc.bsky.socialSep 27, 2026, 2:15 PM

After living with ME for 40 years, for countless reasons I'm more grateful than I can express for the #ME community.
#pwME are a great example of how online communities can have multiple important benefits for patients, in some cases it can literally be a life line.
💙🛟💙

@stpaulsbay.bsky.socialSep 27, 2026, 12:47 PM

How did the genetic cause of ME/CFS stay hidden this long? One big reason: the assumption that lab values can ever tell you what is happening in the cell. The elevation of lab values over patient experience is one of the biggest scandals of modern medicine. #rs5522
#MECFS #LongCOVID #PwME #Spoonie

@stpaulsbay.bsky.socialSep 27, 2026, 12:23 PM

They have #pwMe so gaslight into thinking there is no cure that when I say THERE IS A CURE, people think I must have never had the life stealing condition. But I suffered, And suffered. And then a 60 yr old drug made it stop. Turns out it had already worked in a clinical trial in 2021!

@sickness.bsky.socialSep 27, 2026, 10:41 AM

The emotional exertion of all this will hit #pwME this week if it hasn't already. So rest up 💙🫂

@mecvsvereniging.bsky.socialSep 27, 2026, 10:02 AM

3️⃣ 𝗠𝗲𝗲𝗿 𝗯𝗲𝗴𝗿𝗶𝗽 𝗯𝗲𝗴𝗶𝗻𝘁 𝗺𝗲𝘁 𝗸𝗲𝗻𝗻𝗶𝘀.

Meer informatie over ME/cvs vind je op onze website:

me-cvsvereniging.nl

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

@mecvsvereniging.bsky.socialSep 27, 2026, 10:02 AM

𝗕𝗲𝗴𝗿𝗶𝗷𝗽 𝗷𝗲 𝗠𝗘?
𝗝𝗲 𝘇𝗶𝗲𝘁 𝗵𝗲𝘁 𝗻𝗶𝗲𝘁 𝗮𝗮𝗻 𝗺𝗶𝗷, 𝗺𝗮𝗮𝗿 𝗶𝗸 𝗸𝗮𝗻 𝗲𝗿 𝗴𝗼𝗲𝗱 𝘂𝗶𝘁𝘇𝗶𝗲𝗻 𝗺𝗮𝗮𝗿 𝗺𝗲 𝘁𝗲𝗴𝗲𝗹𝗶𝗷𝗸𝗲𝗿𝘁𝗶𝗷𝗱 𝗯𝗲𝗿𝗼𝗲𝗿𝗱 𝘃𝗼𝗲𝗹𝗲𝗻

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

Begrijp je ME? “Je ziet het niet aan mij, maar ik kan er goed uitzien, maar mij tegelijkertijd beroerd voelen” #mecvs #pwme #me #mecvsvereniging #contact #erkenning
@swastrosarah.bsky.socialSep 27, 2026, 6:59 AM

Yoga Nidra is perfect for #pwME
Western medicine could learn a lot from it, if only they wouldn't call it 'mindfulness' 😅
Being mindful of 200+ symptoms would drive me insane. Soothing the pns is wholly different, almost as good as sleep used to be before #ME #LongCovidME and has 0 metabolic load.

@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
@longcovidadvoc.comSep 26, 2026, 8:37 PM

#longcovid #MEcfs #millionsmissing #disability #pwME

@longcovidadvoc.comSep 26, 2026, 3:20 PM

Anna is also taking part in the diverse voices pitch event with her amazing non-fiction book of wildlife observation from her Glasgow garden!

Do show her some ♥️ & support

#pwME #MEcfs

@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.
@longcovidadvoc.comSep 26, 2026, 11:32 AM

💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME.

📻 6-9pm Saturday

🔥 Both have been exceptional allies to #pwME so it should be a good one!

Note: if listening on phone, you need the LBC app which needs setting up before.
www.lbc.co.uk/radio/

@katybrc.bsky.socialSep 26, 2026, 11:06 AM

I've emailed this brilliant article to the board of directors & the council of governors at & my local 🏥 Chelsea & Westminster.
They offer great care in other areas of medicine but where #ME is concerned they fail abysmally & they have a responsibility to change that.

#pwME

@me-with-me.bsky.socialSep 26, 2026, 8:45 AM

#pwME for 30+ years, I concur. Not only has my reading ability been reduced, but also my ability to understand a group of words. The individual words I understand, but the whole just doesn’t always process. I can have forgotten the beginning of a sentence before I reach the end. I miss reading.

@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
@tomkindlon.bsky.socialSep 25, 2026, 10:42 PM

8-page document "ME, CFS and Long Covid Health and Care Passport"
suffolkfed.org.uk/wp-content/u...

Could be used by people in lots of countries

#MEcfs #LongCovid #PwME #CFS

ME, CFS AND LONG COVID HEALTH AND CARE PASSPORT SECTION 1: CRITICAL INFORMATION AT A GLANCE Personal Information Name: I Prefer to be Called: Date of Birth: NHS Number: Address: Hospital Number: Emergency Contact Name: Contact Number: Relationship: MY CURRENT STATUS Selection Status Meaning ☐ GREEN: I am at my BASELINE I am managing within my energy limits but remain at risk of PEM. ☐ AMBER: I am STRUGGLING / AT RISK OF A CRASH My symptoms are worsening. Please minimise ALL exertion immediately to prevent a crash. ☐ RED: I am in a CRASH / SEVERE RELAPSE Assume I have zero available energy. All interaction is potentially harmful. Please follow my emergency care plan as set out in this section, MY CURRENT SEVERITY Selection Severity Meaning ☐ Mild I may need support for some tasks and may have difficulties with mobility. ☐ Moderate I have reduced mobility, and I am restricted in all activities of daily living. ☐ Severe I am confined to the house, need help with all activities, sensitive to light and sound. ☐ Very Severe I am confined to bed, hypersensitive, dependent on care, need help with personal hygiene, eating.