Grilled Cheese

ExploreLog inSign up
Terms of UsePrivacy PolicyCommunity StandardsHelpGet the app

Grilled Cheese is a product of Village Compute

Version devBuilt at: 2026-10-10 01:38:52 EDT

Explore

PostsPeople
LatestRanked
@anilvanderzee.bsky.socialOct 8, 2026, 2:13 PM

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...

@tomkindlon.bsky.socialOct 7, 2026, 7:59 PM

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

@tomkindlon.bsky.socialOct 3, 2026, 2:35 PM

2/
Photo of Esther Rantzen

#MyalgicE #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of Esther Rantzen
@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.
@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"
@actionforme.bsky.socialSep 29, 2026, 8:00 AM

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.
@actionforme.bsky.socialSep 28, 2026, 8:00 AM

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.
@tomkindlon.bsky.socialSep 27, 2026, 4:26 PM

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)
@precisionlife.bsky.socialSep 25, 2026, 4:47 PM

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

@anilvanderzee.bsky.socialSep 24, 2026, 10:59 AM

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

@tomkindlon.bsky.socialSep 22, 2026, 7:40 PM

"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).
@irishmecfsassoc.bsky.socialSep 22, 2026, 3:43 PM

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
@anilvanderzee.bsky.socialSep 20, 2026, 6:58 PM

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

@anilvanderzee.bsky.socialSep 20, 2026, 4:05 PM

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

@madelinenerd.bsky.socialSep 19, 2026, 11:57 PM

New podcast episode: MASKING
open.spotify.com/episode/7BEa...

Where I talk about how I mask pain and survival fear. And how that tends to work with persons with disabilities

#MyalgicEncephalomyelitis #canpoli #disability #MyalgicE #pwME #chronicpain #fibromyalgia #MEAction #Canada

@anilvanderzee.bsky.socialSep 19, 2026, 9:21 PM

"A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference"

Thanks to Fred Verdult for his talk and for organizing the honor. Thanks to Michael Chapman for the video of this special moment.

vimeo.com/whei/anil-ro...

#pwme #myalgicE #millionsmissing #severeME

@actionforme.bsky.socialSep 18, 2026, 8:00 AM

⏰ Our AGM is next week!

Join us online on Tuesday 22nd Sept from 2pm–3pm to hear about Action for ME's work over the past year and our future priorities.

There's still time to register: us02web.zoom.us/webinar/regi...

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Action for ME logo followed by stamp saying "Final reminder". Text below reads "Annual General Meeting. Last Chance to register. Hear about our organisation's activities and acheivements over the past year and look ahead with us to future priorities. Tuesday 22nd September 2026 2-3pm Online - Zoom.
@anilvanderzee.bsky.socialSep 17, 2026, 6:37 PM

Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:

www.devragendokter.nl/webshop/prod...

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

@actionforme.bsky.socialSep 16, 2026, 4:00 PM

We’re attending the NHS Scotland Event 2026 and ALLIANCE Connect networking next week to share Learn about ME free resources for healthcare professionals.

More info: www.actionforme.org.uk/learn-about-...

@alliancescot.bsky.social #LearnAboutME #NHSScotlandEvent #MyalgicE

@anilvanderzee.bsky.socialSep 16, 2026, 1:07 PM

Ties en Siem (5 en 10) lopen voor hun zieke moeder met ME.

Steunen jullie deze helden en daarmee ook biomedisch onderzoek?

supporta.com/optw/1gjwl4v...

#pwme #myalgicE #severeME #MEcvs #PAIZ #PAIS #IACI #IACC #MillionsMissing

Load more