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@michaelnobbs.bsky.socialOct 1, 2026, 9:11 AM

Good morning. It feels very calm by my gate this morning.

The sheep have been rather absent of late, but it was lovely to spy one at the crest of the hill as I recorded today's #MorningView. 🐑

Have a lovely day ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@swastrosarah.bsky.socialOct 1, 2026, 8:03 AM

Go gently. #ME is a very serious illness. Recovery, such as it is, is so slow, the decay we call aging takes hold faster.
The top priority for UK #ME research was agreed to be #PEM in 2022. Working that knowledge should help keep #pwME safe from the torture you endure
psp-me.co.uk?fbclid=IwAR1...

@nlizaki.bsky.socialOct 1, 2026, 6:50 AM

In Pakistan, landlords do not like to rent to unmarried women, much less disabled women. Your support helps Nevra overcome barriers and meet basic needs for housing, food, and medical care.

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

#SaveLizNevra #MECFS #SevereME #MillionsMissing #pwME

Photo, no description
@tomkindlon.bsky.socialOct 1, 2026, 12:27 AM

DNA methylation: unifying framework for complex chronic conditions

www.cell.com/trends/genet...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #PwME #CFS #Fibromyalgia

DNA methylation: unifying framework for complex chronic conditions — Sharma et al Review. "epigenetic regulation, particularly DNA methylation, offers a powerful framework for linking environmental triggers, host susceptibility, and persistent changes in gene regulation. Its relative stability, sensitivity, and accessibility in peripheral tissues position it as a leading candidate for biomarker development, disease stratification, and monitoring of disease trajectories." Article | Thread
@irishmecfsassoc.bsky.socialSep 30, 2026, 10:35 PM

Tom Kindlon @tomkindlon.bsky.social : The joint best attendance ever for these social gatherings at the Bell.

Some people travelled a distance to attend, with people there from 4 counties.

#MEcfs #PwME #CFS

Irish ME/CFS Association logo Dublin 15 informal meet-up (September 2026) An 8th person opted not to be in the photo a photo of 7 people around the table
@stpaulsbay.bsky.socialSep 30, 2026, 8:47 PM

ME/CFS is trying to animate a corpse from the inside out. You look normal but you are dying inside. Patients aren't just deconditioned or depressed, you epic assholes. I’ve lived on both sides now and you are dead wrong.
#NEISVoid #pwME #millionsmissing #chronicillness #rs5522 #LongCovid

@litsadremousis.bsky.socialSep 30, 2026, 7:48 PM

I'm
so
fucking
tired
of
living
like
this.

#MyalgicEncephalomyelitis #pwME

@meactnet.bsky.socialSep 30, 2026, 5:18 PM

Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! https://youtu.be/gopHHk_4R4c

We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC

Portrait of Marisa Renee Lee smiling with information on her workshop video on managing uncertainty and chronic illness. Photo: Black woman with long hair wearing a deep purple top and smiling. On each side of that photo is a picture of one of her books: Waiting for Dawn and Grief is Love. Text above: Dealing with Uncertainty and Chronic Illness- A workshop with Marisa Renee lee. Video now available!
@swastrosarah.bsky.socialSep 30, 2026, 4:13 PM

Most #pwME cannot drink alcohol 😔
If a doc suggests a g&t on the recommendation of a patient with CFS, you know they're clueless about #ME
(ie shameless Dr David Strain, author of NHS e-Learning modules ⚰️)

@meassociation.org.ukSep 30, 2026, 3:55 PM

ME Association Christmas cards have arrived! 

Choose from 3 lovely designs and get your 2026 Christmas cards today - £4.50 for a pack of 10, with free UK delivery!

https://meassociation.org.uk/product/christmas-cards-tree/ 

#pwME #MECFS #MEAssociation #ChristmasCards #CharityChristmasCards

IMAGE DESCRIPTION: Photo of a Christmas card featuring 3 wise men following a star.IMAGE DESCRIPTION: Photo of a Christmas card featuring a village scene and a Christmas tree.IMAGE DESCRIPTION: Photo of a Christmas card featuring a deer with mistletoe in its antlers and robins flying around.
@meassociation.org.ukSep 30, 2026, 1:59 PM

The UK ME/CFS Biobank have shared updates about their latest work in their newsletter: https://us7.campaign-archive.com/?u=d5cd5b59c73011a4ce28bf62f&id=00c40f523d

#MECFS #pwME #MyalgicE #MECFSBiobank

IMAGE DESCRIPTION: Photo of blood samples. Heading: UK ME/CFS Biobank Newsletter Update. Logos: ME Association, London School of Hygiene and Tropical Medicine, Cure ME.
@cabruce.bsky.socialSep 30, 2026, 1:31 PM

What I desperately needed to hear when I was diagnosed with #ME was
1. It’s real
2. It’s not your fault
It would have been wonderful to also know that there was a free National Care Programme in place that understood the needs of a #pwME.
People refuse to accept they could get ill at any time.

@stpaulsbay.bsky.socialSep 30, 2026, 12:39 PM

www.beyondbloodtests.org
#rs5522
#Spoonie
#MillionsMissing
#ChronicIllness
#pwME

@michaelnobbs.bsky.socialSep 30, 2026, 9:58 AM

It’s a beautiful morning here in Wales and I was excited to come out and record my #MorningView today.

I hope there’s some sunshine, either real or metaphorical, where you are today.

Go gently ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@meassociation.org.ukSep 30, 2026, 8:40 AM

1/2: Daily Mail Online: The cause of your chronic and severe fatigue: Scientists studied the make-up of people with the illness... and now think they've found the genetic traits to blame [PAYWALLED]

Full article: https://tinyurl.com/2vkvhrvv

#MECFS #pwME #MyalgicE #Research

IMAGE DESCRIPTION: Photo of a scientist looking through a microscope. Photo of Dr Charles Shepherd. Heading: "Daily Mail Online share article about recent ME/CFS Research, with comment from Dr Charles Shepherd"
@tomkindlon.bsky.socialSep 30, 2026, 12:20 AM

From Germany

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study

www.amjmed.com/article/S000...

Screenshot from Science for ME weekly update

#MEcfs #PwME #CFS

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Prospective, Open-label, Non-randomized Controlled Intervention Study — Peters et al "At the post-rehabilitation visit the Bell scale was lower in 45% of patients and higher in only 14% compared with baseline" "Our findings question the clinical value of current rehabilitation in ME/CFS, even when specifically adapted to the disease, particularly for severely affected patients." Article | Thread
@swastrosarah.bsky.socialSep 29, 2026, 7:14 PM

Same here in the UK.
Electing that man twice may have undermined confidence beyond the repairable, when the US is leading the world on AI swarms too. But probably not. People still love caffeinated sugary drinks 😅
How does China look from your side of the planet? What happens to their #pwME?