Lmst

Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion

https://www.sciencedirect.com/science/article/pii/S2666354626000207

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers

Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion — Liu et al.
"While IgG-induced mitochondrial fragmentation and alteration in energetics were more prominent in post-infectious ME/CFS patients, IgG-induced alterations in inflammation-associated cytokines were prominent in PCS-CFS patients." "We hypothesize that PCS-CFS patients represent an early stage of ME/CFS"

Disappointing this didn't replicate earlier study

Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0341334

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum — Audrey A. Ryback et al.
"Despite our best efforts to replicate the study and findings from Fluge et al (2016), these results failed to demonstrate an effect of ME serum on increased OCR in cultured myoblasts." "Our results do not rule out the possibility of ME-biased factors being present in serum, but they do not support the use of this experimental method for detecting such factors."

Mike Harley has reached a new milestone - 10,000 miles - in his marathon challenge fundraising. That includes all his training runs, 38 marathon races, and 11 half-marathon races. To date Mike has raised £52,518 for @invest_in_me_research

https://mikeseumarathons.blogspot.com/p/10000-miles.html

https://www.justgiving.com/fundraising/mikeseumarathons

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

The Norwegian ME Association has stated the draft Norwegian guidelines on long-term fatigue, including ME/CFS has major shortcomings

Google translation of links:

https://www-helsedirektoratet-no.translate.goog/retningslinjer/utmattelse-langvarig-utmattelse-inkl.me-cfs-horingsutkast?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

https://www-me--foreningen-no.translate.goog/nye-retningslinjer-forste-reaksjon/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Norwegian guidelines The Norwegian Directorate of Health has published a draft for guidelines on long-term fatigue, including ME/CFS. The Norwegian ME Association has stated the draft has major shortcomings. The draft is now open for external consultations until May 4th.
Guidelines draft l Statement from TNMA l Thread

(Hampshire, England)
ME & Long Covid Research: "Stronger Together"

More info here:
https://mecfsalliance.org.uk/

An impressive set of UK & international speakers for this March 4 event

#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

ME
CFS
ALLIANCE
mecfsalliance.org.uk
To mark our 20th Anniversary The ME/CFS Alliance in collaboration with Professor Sir Stephen Holgate presents a symposium to discuss
M.E. & LONG COVID RESEARCH
'STRONGER TOGETHER' Building the Network for The Next Strategic Steps
Wednesday 4th March 2026 in The Pavilion
at Winchester Cathedral 10.30am - 4.00pm
A collaboration of UK and International Scientists, Clinicians, Stakeholders and M.E. Charities discussing the next vital strategic steps of M.E. research
Ticket price £25, concessions £20* (includes lunch and a prize draw)
For further information & tickets please email info@mecfsalliance.org.uk
*concessions: low income & disabled

The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal

https://www.youtube.com/watch?v=pgqi2W9dmLc

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

Comment: I haven't watched it myself so far

#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM

Spotlight: Dr. Heather Taylor
Spotlight: Dr. Heather Taylor
Understanding The Grief of Chronic Illness

In this episode of 'Grief is the New Normal', Dr. Heather Taylor, a licensed psychologist and grief specialist, discusses The Emotional Toll of Chronic Illness: Naming the Invisible Grief .

She explores the complex emotions and changes that come with chronic health diagnoses, sharing her own personal story as a patient. She offers insightful strategies for coping, redefining success and joy, and the importance of community support.

If you or a loved one are dealing with a chronic illness, this video may provide some insight and support.

Click here to watch.

🧵
Interview with Bita Nezamdoust - medical sociologist and author of "Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome"

https://chroniclivingtherapy.com/nezamdoust-marginalisation-neglect-severe-me/

Screenshot from Chronic Living Therapy newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME

1/

Bita Nezamdoust - medical sociologist

We start 2026 with this interview in which Bita Nezamdoust reflects on her recent publication, looking at how isolated patients use social media. She reflects on how this may help therapists to understand the experiences of people with severe and very severe ME.

This patient group is often neglected due to the 'non-standard' approaches needed to search them out and listen to them. Using short communications on social media is an ingenious way to amplify some of the voices and needs of these patients.

Bita gave generously of her time in answering my many questions and the article gives an empathetic insight into the lives of people with severe, and very severe, ME.

Read Bita Nezamdoust's article

Photo of Bita Nezamdoust

2/

"Basically, your body has needs.

Your life has demands.

They don’t always shake hands.

So instead of perfection, think about harm reduction.

Not: How do I avoid overdoing it ever again?
But: How do I soften the impact when life doesn’t give me a choice?"

#MEcfs #LongCovid #CFS #PwME @mecfs @longcovid

From ME Research UK:

Research of ten implicates herpesviruses in ME/CFS. Read about a study published this month that analysed antibodies to herpesviruses proteins in a disease cohort vs healthy controls: https://tinyurl.com/t8tpw8sz

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Heightened antibody responses to herpesviruses in females with ME/CFS The dUTPase protein is essential for body processes and also encoded by various viruses. IgG antibodies against dUTPase protein can act as markers of herpesvirus exposure/reactivation. Methods: 40 females with ME/CFS vs 16 healthy controls 800+ blood samples analysed for antibodies to multiple human herpesviruses dUTPase proteins Key findings: • High prevalence of dUTPase IgG antibodies to multiple herpesviruses in ME/CFS cohort compared to the control group (75% vs 31%). • 12 ME/CFS participants were positive for antibodies to dUTPases of all the studied viruses compared to only one healthy control. Important caveats: The study included only females. The Fukuda criteria were used for participant selection, which do not require the presence of post-exertional malaise Palomo, I.M.et al (2026). Chronic Reactivation of Persistent Human Herpesviruses EBV, HHV-6 and VZV and Heightened Anti-dUTPase IgG Antibodies Are a Recurrent Hallmark in Post-Infectious ME/CFS and is e/ Associated With Fatigue. Journal of medical virology. RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942

Thanks for reading. x
#HourlyComicsDay #MEcfs #pwME

“I’m going to end on the nice things from the last week - a page I was happy with, a book I loved, messages from friends” - over photos of messages from friends, snowdrops coming out the back, the left hand of darkness book, and a couple of stupid screenshots from star trek. “My helath is bad right now. but when I go looking, I realise there are so many good things, too, that they won’t fit on the page.”

Making the artistic choice not to draw 10 more panels of myself struggling to move

#HourlyComicDay #MEcfs #ChronicIllness #pwME

(6pm - I’m still trying to get better at knowing my limits).
For the same reason, I’m not sure I want to draw this bit.
(For diary comics, I make notes on the day itself, but draw the day after.)
6pm. sometimes, I end up getting too weak to move. today I made it back to bed: no problem.
Other times I end up stuck downstairs, or in the studio.

Night falls. I’m too weak to turn on a light. the ‘flu-like’ symptoms get worse, everything hurts. it just feels emotionally shit.
Last week, everything also ran out of battery. my partner was on calls.
I could move my fingers enough to send messages before my phone died (a message reading ‘using my last battery to complain as if i’m dying dramatically in the antarctic or something’) then just had to stare at the ceiling in the dark for an hour (message reads ‘It’s not the end of the world. Just depressing’).

Instead of comics this part’s just notes app screenshots, reading:
Hourly comic day notes
[1 hour later, I hear when my partner finishes his call and checks his texts]
- My partner: NOOOOOOO
- (bursts open the door)
- partner: you could have kept texting me to help you back to bed if it was urgent!!! me: it’s not urgent. also I thought i might regain enough health to get up
Caption: Nowadays I have a wheelchair, so rarely collapse outside any more. Indoors, my partner is my carer, and almost always there to help.
I know not everyone disabled has that. I’m thinking of you

Over a dark background, text reads:
I’m thinking of the disabled people rejected from benefits. Who don’t have carers. The ones I’ve seen on video getting arrested for peaceful protest, or in the US news, disappeared and dead without the care they need. i’m thinking of the ones reading this and just having a miserable day. I love you, I’m glad you’re here.

In case you missed this big, exciting news:

Germany Declares 'National Decade Against Post-Infectious Diseases'

https://www-bmftr-bund-de.translate.goog/SharedDocs/Kurzmeldungen/DE/2025/11/nationale-dekade-postinfekti%C3%B6se-erkrankungen.html?utm_source=newsletter&utm_medium=email&utm_campaign=february-2026-newsletter&_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

#MEcfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

Germany Declares 'National Decade Against Post-Infectious Diseases'

The German government has launched a ten-year initiative to find the underlying biological mechanisms and effective treatments for post-infective diseases. The 'National Decade Against Post-Infectious Diseases' initiative commits 500 million Euros over ten years ($540 million) and will specifically focus on ME/CFS. Federal Research Minister Dorothee Bär, in announcing the strategy, noted that "The need for research is enormous: for ME/CFS and post-viral autoimmune diseases there are still no simple solutions or therapies, and previous studies demonstrate the complexity of the disease mechanisms."

I honestly think it was hourly comics diaries (8+ years ago) that made me first think about how to represent my illness in drawings, and the response that made me more confident how valuable it was for people to see

#HourlyComicDay #pwME #MEcfs #disability #ChronicIllness

I’m drawing my first full book about someone with the same disability as me.
Back when I could still do conventions pre-covid, I remember someone asking (drawing of someone indistinct in a powerchair - I don’t want to put them on blast or anything) ‘do you have comics with disabled main characters?’
it was something I’d been thinking a lot about - but I didn’t feel ready.
I think I need hindsight to give personal themes a resolution

And my books often end up having chronic illness metaphors…
Me pointing at my comic finding home: he can no longer do magic without damaging himself, and there’s nothing he can do. he just has to choose to damage himself a little to do what he loves. he has to learn to live with it, restrained forever
Me pointing at my book Night at the Vampire Castle: so when they died, they were completely cut off from their old life and hopes and dreams, no longer able to exist safely in public, living in a miserable grief-filled shadow of their former life
readers: ohhh
me: OHHHHH

Over an illustration of me from before, having to plan carefully, in a subdued green colour: But the main thing is, I’m forced to endure, monitor and plan for my illness constantly. Work hours sometimes grant the small freedom of NOT thinking about my health directly
Over a dark background: one double-page spread about the hardest parts of my life doesn’t take long to read, but to draw, it means focusing in on that moment for days - while I’m already living it the rest of the time.
Over a lighter background: I’m glad my health and housing is now stable enough for tackling this story to feel possible.
But I want to keep making different kinds of book - and talk about the things that affect me in my own way

90% of what I’m doing at the moment is Having An Illness and working, so here’s a sidebar about graphic novels

#HourlyComicsDay #pwME #MEcfs #disability #comics

“2pm...3pm...4pm...5pm…”
Next to a drawing of me still lying in the chair drawing “after a while I have to swap from politics podcasts to friends at the table, before I lose the will to live. I was really just working, so here’s a detour to tell you about how—“ and in a big bubble “Graphic novels probably take longer than you think - the process is different for everyone, but for me…”

over a drawing of me on a slow years-long road to making a graphic novel. “I usually take a few years developing and researching a book idea first…”
2022 - while finishing up other books, drawing first ideas… (next to a bubble of various 19thC ship stories, ‘female’ sailor real history, ideas about empire, pic of 1995 persuasion, a 19thC wheelchair…)
2023 - script and pitch (a drawing of me looking like charlie day at the red string board meme, frantically explaining my ideas to my patient agents)
2024 - pitch sent (me anxiously watching the clock)
the road separates into ‘book deal’.
“like most cartoonists, I take at least 1.5-2 years* to draw a full y.A. book*if paid enough to workon it mostly full-time”
Me drawing fulltime for 2025 - 2026, heading towards ‘2027’ deadline, ‘then big publishers usually take 1+ year to print & promote’ and ‘2028 release’.

Including self-published, this is my 10th book, so I know my own process
STARTING THE FINAL STAGE: this is looking great! this is my best work yet!!’
END OF FINAL STAGE: almost done! can’t wait to finish (and take a break…!)
MIDDLE OF FINAL STAGE: a drawing of me looking tragic as it rains outside: day 528… the winter is long and hard this year... morale is low…

Me: every day i work so hard but progress less than 1% further…
My wise friends last time they visited: I mean definitely don’t think about it like that
me: this is a dream project, why aren’t I enjoying every moment of it
another wise friend: I don’t think that’s possible… especially in the global situation??
me (new panel, lying grimly in bed): WHY DO I FEEL SO AWFUL
my wise partner: probably the great illness, babe. were I to hazard a guess. are you in pain right now?
Me: well… of course.. but…
Caption: I’m trying to go easy on myself.

10am-1pm My health is at a low ebb at the moment

#hourlycomicday #pwME

“10am The fact that I’m too tired to respond will not stop my partner doing bits”
as my partner presents breakfast saying ‘your tea and porridge, monsieur sir’ as I lie very ill weakly going ‘ty… love you…’
“waiting to become well enough to lift the tea” staring flatly.
Then finally able to drink the tea (‘didn’t even get gold first today’) with a ‘victory…’

“11am Chronic illness involves a lot of planning, and doing things in tiny steps”
A drawing of me in bed writing in my planner trying to do calculations, labelled ‘still in a crash from walking to the tree in the garden days ago…’ thinking ‘can’t shower on teh same day as a work call or I’ll be too tired… can’t call my mum..’
Caption continues: “but sometimes I sacrifice physical health to talk to a friend or go outside, even when I’m doing badly”
On saturday (for 10 minutes) me and my partner are in the garden with pruning shears.
my partner: let’s prune it here?
me: I want to be careful with the apple tree because of my great love for it.
my partner: you can’t even digest apples
me: nevertheless

“12pm The amount of energy social media work takes shocks me every time somehow - Last week I finally got to announce the book I’ve been drawing, which was exhausting, but reassuring...”
My phone has notifications pinging from it, saying “readers
are excited!!” “your friends obviously still remember you, you idiot!!” and “cool artist commented on your post” as my face takes the shape of the pleading emoji, emotionally overcome.
“1pm Almost every weekday, I’m working on final comics pages…”
Next to a pic of me drawing lying down “made it next door to my studio & special recliner chair…”

Diary comics thread for hourly comics day ✏️ intro/9am

[read together in one place here https://www.patreon.com/posts/150040198 ]
#hourlycomicday #MEcfs #pwME #ChronicIllness

graphic reads ‘hourly comics day disability diaries’ with a drawing of me (white nonbinary guy w black facial scruff & short green hair) lying in bed looking shattered. Lower text reads ‘hello. I make comics, and—‘

“This year’s my 10 year anniversary of chronic illness (ME/CFS)” - a small cartoon of me with a balloon going ‘wow!!’ then ‘…wait.’
In an inset past year’s comic, I’m going ‘hopefully later I’ll be well enough to draw a little!’ but end up lying still in bed all day - ‘alas’.
“*8 years of my illness being “moderate to severe” = mostly bedbound, unable to walk down the street or prepare a meal without collapsing.”

“I’ve been making a day of hourly comics every February since I first got ill” (some pics of many years worth of hourlies,w ith me waking up feeling exhausted, too ill to sit up)

“It can be hard, but it means a lot to share the reality of my daily life honestly and to hear from others in the same boat. So here’s Hourly comics day 2026” - a small baloon now reads ‘still here!’ next to the same drawing as the first, me now waking up. 9am - “good morning my body feels like it’s been run over by a train’

"Pacing in the Real World"

Another blogpost I liked a lot by this OT who specialises in ME/CFS & long Covid.

Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection

https://onelifelivedwell.substack.com/p/pacing-in-the-real-world

#MEcfs #LongCovid #CFS #PwME #Pacing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs @longcovid

Another blogpost I liked a lot by this OT who specialises in ME/CFS and long Covid.
Contains lots of practical tips. As she says, an emphasis is harm reduction rather than perfection
"Pacing in the Real World"
https://onelifelivedwell.substack.com/.../pacing-in-the...
Headings:
1: Let’s start here: perfection is a myth (and honestly, a little rude).
2: Triage, a tool for days when everything feels urgent
3: Micro-recoveries (a tiny rebellion).
4: Positions matter more than you think
5: Help looks different when you don’t have a village.
6: Cognitive load counts too.
7: Lower the bar (I know, I know).
#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Pacing in the Real World

Where stopping isn't always an option.

Abby
Nov 10, 2025

Sometimes pacing can feel like a luxury for people who have margins, people who have extra hands, extra hours, extra anything. What do you do when the world still expects you to operate like nothing has changed, even when your body has?

A source for soundproofing material. From a report on a carers' group meeting.

Links:
https://www.audimute.com/?srsltid=AfmBOoroq-oztCCyDsWYuOfTj0brxVBYOTicWgLq0x0-AfSMtfxwM4Wa

https://www.amazon.com/stores/Audimute/page/A4D2379B-B4AD-4700-A085-096A2AF15C1F

COI: I have no financial or other interest in these companies

#SoundSensitivity #NoiseSensitivity #LongCovid #MEcfs #CFS #PwME #SevereME #SevereMECFS @longcovid @mecfs

Many of those we care for are sound sensitive which means that sound proofing or minimizing sounds is important.
Audimute.com sells sound proofing materials (https://www.audimute.com/?srsltid=AfmBOoroq-oztCCyDsWYuOfTj0brxVBYOTicWgLq0x0-AfSMtfxwM4Wa ) and a call participant who uses them is well satisfied with them.
https://www.amazon.com/stores/Audimute/page/A4D2379B-B4AD-4700-A085-096A2AF15C1F

Cornell researchers performed longitudinal plasma proteomics (SomaScan7K ) in 79 #MECFS vs 53 controls around two maximal CPETs. Findings: Persistent immune & metabolic dysregulation in recovery, linked to PEM. Learn more on our website.

https://neuroimmune.cornell.edu/news/uncovering-protein-signatures-of-post-exertional-malaise-in-me-cfs

#PwME #CFS @mecfs

(US) Protect Medicaid access for people with ME/CFS and Long COVID

https://www.meaction.net/freakin-frail

Screenshot from February 2026 AMMES newsletter

#MEcfs #LongCovid #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
@longcovid