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knivesonly.bsky.social
#MECFS #MyalgicE #PEM
October 27, 2026 at 5:21 PM
veganmua.bsky.social
Very Severe ME/CFS : FOR UK ME Charities to Provide Individual Advocacy and Legal Support - Sign the Petition! c.org/SRLc4cfjZV #MECFS #MyalgicE #SevereME
Sign the Petition
Very Severe ME/CFS : FOR UK ME Charities to Provide Individual Advocacy and Legal Support
c.org
October 26, 2026 at 11:23 AM
fyttirakkernagitt.bsky.social
Protest i morra foran stortinget kl 15, med følgende krav:

STOPP felles retningslinje for #MEcfs og langvarig utmattelse!
EGEN retningslinje for ME og postinfeksiøs sykdom med PEM!
EGET kompetansemiljø for ME og postinfeksiøs sykdom med PEM!

#LongCovid #MyalgicE #Pais
October 27, 2026 at 7:02 PM
anilvanderzee.bsky.social
Minister Sophie Hermans stelt dat ze gezien de begroting geen geld heeft.

In mijn optiek is dat een kwestie van prioriteiten. Als PAIZ een prioriteit was, dan was er zeker meer mogelijk geweest dan wat er nu gebeurt.

archive.today/Me6cJ

#protestwake #PAIZ #PAIS #myalgicE #millionsmissing
October 25, 2026 at 8:52 PM
meassociation.org.uk
Update: ME Association investment in UK ME/CFS Biobank exceeds £1M

Read the latest updates and minutes from the UK ME/CFS Biobank Steering Group's September meeting, chaired by Dr Charles Shepherd, MEA Hon Medical Adviser.

https://meassociation.org.uk/1r3l

#MECFS #pwME #MyalgicE
Update: ME Association investment in UK ME/CFS Biobank exceeds £1M - The ME Association
Read the latest updates from the UK ME/CFS Biobank Steering Group meeting, September 2026.
meassociation.org.uk
October 26, 2026 at 1:31 PM
madelinenerd.bsky.social
Latest podcast ep: Apocalypse Nightmare
open.spotify.com/episode/2Mss...
I wish this was unusual, nightmares based on being about a month away from running out of GoFundMe money. But it's not. It's just unusual that I'm documenting it
#myalgicE #chronicpain #chronicillnessp #Longviral #disability
Apocalypse Nightmare
open.spotify.com
October 19, 2026 at 3:53 PM
meassociation.org.uk
OMEGA Event: Latest ME/CFS Research from Professor Karl Morten and colleagues!

Tickets: https://www.eventbrite.co.uk/e/latest-me-research-from-professor-karl-morten-and-colleagues-tickets-2002752353201

#MECFS #pwME #MyalgicE #Research
Latest ME Research from Professor Karl Morten and colleagues
Join Prof Karl Morten and colleagues in person or online to catch the freshest insights on ME research and breakthroughs!
www.eventbrite.co.uk
October 19, 2026 at 10:36 AM
anilvanderzee.bsky.social
A blog about the multiple reasons why I keep fighting. Why I thus far stay alive.

"The fight against the injustice done to the patient community is a big driver.

I just can't and won't shut up about it!!!”
anilvanderzee.com/staying-aliv...

#pwme #myalgicE #millionsmissing #severeME #MECFS
Staying Alive Is My Protest - Anil van der Zee
With the sadly increasing number of people with ME passing away, not uncommonly dying due to suicide or euthanasia, sometimes weekly, I often get asked why I keep holding on with severe ME, or if I ev...
anilvanderzee.com
October 18, 2026 at 10:30 AM
anilvanderzee.bsky.social
My thoughts about the film Complicated, with children who have EDS/hEDS, where they and their families are not being take seriously. With child protective services as a result.

Medicine needs to do better!

www.facebook.com/share/p/1XDf...

#EDS #hEDS #pwme #myalgicE #millionsmissing
October 16, 2026 at 11:17 AM
meassociation.org.uk
1/2: A new play is coming to London! Created by Noah McCreadie, who will be performing this one man show at the The Union Theatre about his friend who had ME, and sadly passed away a few years ago.

4 November 2026 - 6 November 2026
Times: 7.30pm
Tickets: £18

#MECFS #pwME #MyalgicE
IMAGE DESCRIPTION: A photo of a young boy, overlaid by the silhouette of two bows sitting and talking together. Wording: The McCreadie company presents Condensation and Cannonballs. The Union Theatre, Wed 03.11 - Fri 06-11 Written and performed by Noah McCreadie, Directed by Hannah McLeod.
October 14, 2026 at 12:45 PM
anilvanderzee.bsky.social
Indrukwekkend stuk met Caroline Van Kessel door ellen de visser.

Sorry zou al een beginnetje zijn Sophie Hermans.

#QVS #LongCovid #lyme #postsepsis #pwme #myalgicE #millionsmissing #PAIZ #PAIS #IACI #IACC

www.volkskrant.nl/wetenschap/l...
‘Laat de minister sorry zeggen voor het wegkijken na de Q-koortsepidemie’
De grote Q-koortsepidemie van zo’n twintig jaar geleden ruïneert nog altijd het leven van velen, weet Caroline van Kessel. Als voorzitter van de patiëntenorganisatie hoort ze de schrijnendste verhalen...
www.volkskrant.nl
October 8, 2026 at 2:13 PM
tomkindlon.bsky.social
4/
Legend: The lower the bars are at any time, the less stress your body is under. So orange represents a more stressful period than blue. This is from a Garmin smartwatch.

#ME #MyalgicE #MyalgicEncephalomyelitis
October 7, 2026 at 7:59 PM
tomkindlon.bsky.social
2/
Photo of Esther Rantzen

#MyalgicE #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Photo of Esther Rantzen
October 3, 2026 at 2:35 PM
knivesonly.bsky.social
#MECFS #PEM #MyalgicE #PwME
October 3, 2026 at 1:32 AM
meassociation.org.uk
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.
September 30, 2026 at 1:59 PM
meassociation.org.uk
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"
September 30, 2026 at 8:40 AM
actionforme.bsky.social
Day 2 of the PRIME International Symposium!

Today's programme focuses on current ME research and collaboration with people with lived experience. Sessions include the Research Involvement Hub, Big Survey findings and emerging research.

actionforme.org.uk/prime

#PRIMESymposium #MECFS #MyalgicE
PRIME International Symposium promotional graphic highlighting Day 2, focused on current ME research, patient and public involvement, and impact, taking place 28-29 September 2026.
September 29, 2026 at 8:00 AM
actionforme.bsky.social
Today marks the start of the PRIME International Symposium, bringing together researchers, industry and people with lived experience to explore ME research and build collaborations.

www.actionforme.org.uk/register-for...

#PRIMESymposium #MECFS #MyalgicE
PRIME International Symposium promotional graphic highlighting Day 1 and the launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium, taking place 28-29 September 2026.
September 28, 2026 at 8:00 AM
tomkindlon.bsky.social
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)
September 27, 2026 at 4:26 PM
precisionlife.bsky.social
M.E. has been overlooked for decades. What will it take to turn recognition into better care?

Sonya Chowdhury, CEO of @actionforme.bsky.social, recently joined us on Biology Matters to discuss the path from research to meaningful change for patients.

#MECFS #LongCOVID #myalgicE #pwME
September 25, 2026 at 4:47 PM
anilvanderzee.bsky.social
Great rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI
September 24, 2026 at 10:59 AM
tomkindlon.bsky.social
"Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging'"

www.rte.ie/entertainmen...

This article is based on a PA piece. There seem to be a number in the Irish media & I imagine quite a large number in the UK media mentioning Miranda's ill-health.

#MEcfs #PwME #CFS #ME #MyalgicE
Miranda Hart: Chronic illness will make Celebrity Traitors 'challenging' Updated / Tuesday, 22 Sep 2026 14:40 Miranda Hart Miranda Hart Miranda Hart has said The Celebrity Traitors will be "challenging" on her body and people will not know if she is "sitting there in pain" because of her chronic illness. The TV star, 53, best known for popular BBC sitcom Miranda, has spoken about being diagnosed with Lyme disease. The disease can be easily treated if caught early, but Hart did not know what was causing her to feel unwell for some time, leading her to be diagnosed with Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
September 22, 2026 at 7:40 PM
irishmecfsassoc.bsky.social
2/
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis

#MyalgicEncephalomyelitis #MyalgicE
From the Irish ME/CFS Association: "What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)" Congratulations to all involved for these plays (including Association members Aoife Delany Reade & Jacinta Fay) which were performed live in Galway as part of Culture Night last Friday. There was also a post-show discussion panel involving Aoife, Jacinta, Áine O'Hara & Association secretary Orla Ní Chomhraí took part. The organisers took disability access seriously making a recording of the plays available live (at the link above) at the same time as the live performance. The post-show discussion panel could also be watched online live (we are unaware of any recording) and one of the panellists was able to give her comments for the discussion as recordings as she was not able to be there on the night. Great to see ME being highlighted through the arts. Note: the F-word is used in the second, third and fourth plays though only sparingly #MyalgicEncephalomyelitis #MEcfs #PwME #CFS #LongCovid See less
September 22, 2026 at 3:43 PM
anilvanderzee.bsky.social
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.

This looks really amazing!!

vimeo.com/user10350947...

#pwme #myalgicE #millionsmissing #severeME
September 20, 2026 at 6:58 PM
anilvanderzee.bsky.social
A blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media.

anilvanderzee.com/the-rush-to-...

#pwme #myalgicE #millionsmissing
The rush to dismiss severe ME or Long Covid in the media may harm you or your loved ones in the future. - Anil van der Zee
The last couple of weeks my social media has had a lot more traffic. Partly due to my own story in the media, but also because other people with (very) severe ME or infectious associated chronic illne...
anilvanderzee.com
September 20, 2026 at 4:06 PM