WHEN GETTING UP BECOMES AN OVERSTRAIN - AND DAILY LIFE and its normal activities BECOME A TRAP with unpayable paybacks and setbacks www.mecfsbuch.de/2025/05/13/w...
Via mecfsbuch.de in 🇩🇪 (but translatable)
#ME/CFS #PEM #PEM≠fatigue

measure & run certain tests while patients w/ ME are not lying down, but when symptoms typically escalate: when sitting and standing, during cognitive exertion or after exertion.
#pwME #NeurovascularDysregulation

“Neurovascular" sounds technical, but is essentially a simple question: Does the brain (and often also the muscles) get the right blood circulation under stress - at the right time, in the right amount? For many #ME/CFS patients, the answer is: no. This becomes particularly clear when you

Two people in lab coats are working together on a scientific research task.

The image shows the agenda for an upcoming ME/CFS Research Foundation event, which includes four topics related to ME/CFS research and new findings.

A large, bright room with tall windows, black curtains, and several freestanding poster displays on rolling stands.

The image shows two people in lab coats, one of whom is examining something on a computer screen.

Int. ME/CFS Conference 2026: Agenda are now live. Focus on new #mecfs research results. Abstract submission for scientific posters now possible. Registration for online participation opens mid-February. Details to follow. 🔗: https://t.ly/Ow2Co #LongCovid #PostCovid

Graphic from Action for ME promoting the ME Friends Online Forum, open to adults in the UK living with ME. Photo in bottom half shows a man using a tablet, with a QR code to the forum sign up page in right corner. Text in top half details the forums support. Action for ME logo in top right corner. 

💻 Join our ME Friends Online forum!

Open to adults in the UK living with ME, our forum offers peer support, friendly discussions & an opportunity to connect with others who truly understand.

Sign up & read the Terms of Use here 👇

www.actionforme.org.uk/sign-up/

⌛ The Big Survey closes tomorrow!

Your responses directly shape our work and help us to illustrate the impact of ME. If you're thinking about taking part, please do.

🔗 Take part today: www.actionforme.org.uk/research-cam...

The Shingles vaccine has outperformed all expectations. Why?
erictopol.substack.com/p/spotlight-...

research, which identified over two hundred proteins whose blood levels differed significantly between people with ME and controls.

blood-based markers to help in the diagnosis of #ME/CFS.
The researchers plan to measure the levels of around 1,100 proteins in plasma samples from people with ME/CFS and control subjects, and use machine learning to classify the participants based on their diagnosis. The study builds on the team’s

Campaign update #29: News to help combat the January blues It’s been a while since our last update.

Campaign update #29: News tohelp combat the January blues from @thereforme.bsky.social

Recent progress in research
On the research side, we were pleased to see that ME Research UK has awarded funding to Prof. Chris Ponting at the University of Edinburgh for a new study investigating the use of

A portrait of Woolf by Roger Fry c. 1917. Virginia faces the viewer with a slightly tilted head and a calm, introspective expression. Her dark hair is parted and swept back into soft, rounded shapes, framing a pale face with large, elongated eyes and lightly flushed cheeks. Her lips are small and red. She wears a muted, loose-fitting jacket or cardigan over a darker blue garment, with a narrow green trim adding contrast along the edges. Her hands rest together in front of her. https://en.wikipedia.org/wiki/Virginia_Woolf#/media/File:Roger_Fry_-_Virginia_Woolf.jpg

On Being Ill at 100: Virginia Woolf’s ‘best essay’ still shapes how we read sickness

Woolf argues that illness is ‘the great confessional’ which is never talked about in literature.

by Lucyl Harrison

theconversation.com/on-being-ill...

Woold at PG:
www.gutenberg.org/ebooks/autho...

#books

Disabled by Design: Never Let Me Go by Kazuo Ishiguro Anindita Charles Xavier explores the representation of disability, state control, and body politics in Ishiguro’s novel.

How can dystopian narratives illuminate real-world structures of coercion, exclusion, and exploitation? Anindita C Xavier explores Ishiguro's Never Let Me Go.

thepolyphony.org/2026/01/27/n...

YouTube video by tkillers music The Killers - Lawyers, Guns & Money Live Rehearsal (Warren Zevon Cover)

The Killers - Lawyers, Guns & Money Live Rehearsal (Warren Zevon Cover)

YouTube video by BobDylanVEVO Bob Dylan - License to Kill (Official Video)

Bob Dylan - License to Kill (Official Video)

Distinct functional connectivity patterns in myalgic encephalomyelitis and long COVID patients during cognitive fatigue: a 7 Tesla task-fMRI study Journal of Translational Medicine - Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID are chronic debilitating illnesses featuring fatigue, post-exertional malaise (PEM)...

8) Link to the paper:

Inderyas et al. 2026. Distinct functional connectivity patterns in myalgic encephalomyelitis and long COVID patients during cognitive fatigue: a 7 Tesla taskfMRI study.

1) 🇦🇺 Australian researchers measured connectivity between brain regions during a cognitive task. They put healthy controls, ME/CFS patients and Long Covid patients in a powerful 7 Tesla MRI scanner.

The controls showed increased connectivity, while the patients did not.

COVID.

respiratory manifestations to include long-term metabolic disturbances. Emerging evidence indicates a significant link between SARS-CoV-2 infection and the onset of diabetes mellitus, establishing this condition as a major element of the post-acute sequelae of COVID-19, often referred to as Long

The silent epidemic within the pandemic: pathophysiology and prediction of post-COVID-19 diabetes - Journal of Translational Medicine Journal of Translational Medicine - The coronavirus disease 2019 (COVID-19) pandemic has presented extraordinary challenges to global public health, with impacts reaching beyond acute respiratory...

The silent epidemic within the pandemic: pathophysiology and prediction of post-COVID-19 diabetes

Review
Open access
Published: 24 January 2026

The coronavirus disease 2019 (COVID-19) pandemic has presented extraordinary challenges to global public health, with impacts reaching beyond acute

two beaches

one stranded starfish
can be carried
back to the sea

a hundred dead
starfish requires
honesty

25.I.26

1) This graph from the German ME/CFS Research Foundation shows the ca. €4 million in funding they collected since 2022 and how they've spent the money.

Administrative costs are borne by the founder, so pretty much all donations go to ME/CFS research.

The following quote reflects the breadth and severity of symptoms associated with PEM in these patients: when I do any activity that goes beyond what I can do—I literally collapse—my body is in major pain, it hurts to lay in bed, it hurts to think, I can’t hardly talk—I can’t find the words, I feel my insides are at war. My autonomic system is so out of whack! I can’t see farsighted and glasses won’t help—only rest. My GI system is so messed up. Any food hurts it. I tried everything from elimination diets to all the GI meds. Nothing is working. My body jerks. The list goes on. There are days that I just want to cry because I can’t take care of myself—I need help. But, I have no help

For context, the comparison of ME/CFS to war comes from patient testimony highlighted in the Institute of Medicine report, where lived experience is used to describe post-exertional malaise — the hallmark symptom of ME/CFS.

Donate to Bedbound in War Zone: Help Daryna Survive MECFS & MG, organized by Sarah Payne Daryna is a 28-year-old woman living in a war zone in eastern Ukraine… Sarah Payne needs your support for Bedbound in War Zone: Help Daryna Survive MECFS & MG

Images from Daryna’s GoFundMe. She is 99% bedbound with severe ME/CFS and Myasthenia Gravis. The photos show damage to her apartment building and neighbouring buildings following shelling in November.

www.gofundme.com/f/help-daryn...

Aftermath of November 17th shelling to Daryna's building and neighboring buildings

Daryna is a 28-year-old woman living in a war zone in eastern Ukraine, fighting severe ME/CFS, Myasthenia Gravis, and multiple other comorbidities while enduring constant bombings and navigating severe disability alone. She is bedbound, coordinating complex medical needs without adequate support, and in urgent need of life-saving treatment and evacuation to safety.

Aftermath of November 17th shelling to Daryna's building and neighboring buildings

Severe #MECFS can often feel like your body is a war zone. I can’t imagine living with it and being in a war zone aswell - with bombs falling outside your home. I’ve just donated to help Daryna escape from Ukraine to Germany.

#NoRehabforPEM #NoGETforME/CFS
#PEMisnonnegotiable #PEM≠fatigue
#ME/CFS #pwME
#PCME

@bettinagrande.bsky.social

The CFS-CARE study showed:
After inpatient #rehabilitation
44% experienced a worsening of symptoms,
only 13% showed improvement
in the #Bell score.
Furthermore, there were no effects on fatigue, pain, or cognition.
This is not merely a null result; the data show:
Rehabilitation is a risk for serious

At the conclusion of the #LongCare conference on January 22, 2026, in Berlin,
a clear message:
For #PEM #MECFS,
no #rehabilitation.
@scheibenbogen.bsky.social presented the CFS-CARE data.
Primary endpoint (SF-36 physical function, 12 months):
no significant difference,
no improvements
no benefit

"The children are always ours, every single one of them, all over the globe; and I am beginning to suspect that whoever is incapable of recognizing this may be incapable of morality."

-James Baldwin, from Notes on the House of Bondage (The Nation, 1980)
#everynightapoem #ofsorts

Photo of somebody having a tilt table test The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test In ME/CFS patients with POTS during tilt testing with measurements of both the CO [cardiac output] and the CBF [cerebral blood flow], two different patterns were observed: 1) appr. two-thirds of patients had an almost 1:1 relation between the %CBF reduction and the %CO reduction. This CBF reduction is abnormal, as in healthy controls the CBF reduction for a given CO reduction varies between 1:3 and 2:3, and may indicate endothelial dysfunction with an inability of cerebral vessels to adequately dilate in the presence of a CO reduction. Appr. one-third of patients showed a limited reduction in CO together with a substantial increase in HR. In these patients, there was no relation between the CO and CBF reduction. These data suggest the presence of a hyperadrenergic response. If this mechanism is proven by norepinephrine levels, the CO is a robust measure to distinguish between hyperadrenergic and non-hyperadrenergic responses. Read more here>>

The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test

www.mdpi.com/2077-0383/14...

Screenshot from the January 2026 AMMES newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance

BP tilt test a 10% reduction in CO resulted in a 9% reduction in CBF, which may be indicative of endothelial dysfunction, limiting compensatory cerebral vasodilation [20].