Grilled Cheese

ExploreLog inSign up
Terms of UsePrivacy PolicyCommunity StandardsHelpGet the app

Grilled Cheese is a product of Village Compute

Version devBuilt at: 2026-10-13 22:15:16 EDT

Explore

PostsPeople
LatestRanked
Load more
@tomkindlon.bsky.socialOct 7, 2026, 8:10 PM

5/
Somebody elsewhere asked about what "feet up" means in this case:

So I am lying on a couch with my feet on top of cushions which are on top of the elevated end of a couch

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@ameliaearhart2.bsky.socialOct 7, 2026, 8:06 PM

Please join me in supporting Mori on their birthday. Mori lives with severe #MECFS, which is more painful & debilitating than you could ever imagine. Mori needs to know: We love you, we support you, and you matter. Match my $50? Thank you. And HAPPY BIRTHDAY, SWEET MORI!!!🧡🧡🧡🧡🧡

@tomkindlon.bsky.socialOct 7, 2026, 7:46 PM

2/

I have noticed this pattern for last month.

I think of it as a continuation of my sleep even though I spend some of the time mentally active, reading and on social media, alternating with some time listening to music.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@chronicallykiki.bsky.socialOct 7, 2026, 6:02 PM

Having my disability cut by nearly £400 is really taking it's toll.
Every little helps. 💖
#spoonie #vtuber #vsky #ffxivstreamer #twitchaffiliate #disability #chronicillness #cfsme #mecfs #smallstreamer #helpsky #mutualaid #maboost #invisbleillness #indievtuber #helpfolkslive

@fwm.bsky.socialOct 7, 2026, 5:57 PM

Behördlicher #Ableismus bei #MECFS : Ignoranz

Inzwischen ist die Akteneinsicht ausgewertet. Es ist spannend, das zu lesen, was beim Redigieren übersehen wurde - es lässt schlimmes erwarten. Und die untergeordnete Behörde drangsaliert und nicht nur, sondern verkauf uns für dumm. Schlechte Idee.

@stpaulsbay.bsky.socialOct 7, 2026, 4:36 PM

Heard of the FOXP4 gene link to increased #LongCovid? It can't be understood without #rs5522. When the overactive MR vacuum steals cortisol at the gate, it starves the GR pathways needed to fuel the FOXP4 lung barrier repair program. 🧬🫁🔋 #MECFS

@stpaulsbay.bsky.socialOct 7, 2026, 4:13 PM

And yet, no one covered it? The mechanism and treatment are fully documented at beyondbloodtests.org, yet no one has taken action. Mainstream medicine is still treating downstream smoke because it's completely blind past the cell wall. Stop waiting for slow institutions. 🧬 #MECFS #LongCOVID

@stpaulsbay.bsky.socialOct 7, 2026, 4:11 PM

The breakthrough biochemical mechanism driving #MECFS first appeared 6 months ago in BBRC. It provided molecular proof that ME/CFS is a real biophysical illness driven by mineralocorticoid receptors stealing the cortisol needed for cellular energy from cells, entirely invisible on lab tests.

@irishmecfsassoc.bsky.socialOct 7, 2026, 4:04 PM

A list we run for members of the Irish ME/CFS Association we thought we would plug.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Contact List (*optional*): Many ME/CFS “sufferers” +/or their carers/families express a desire to have contact with others in a similar situation. If you’re an ME/CFS sufferer, a carer/parent, spouse/partner, child or other relative/friend & you +/or any members of your family would like to have your/their name, phone no. (or other contact details) & (rough) address included in the Contact List (which will be printed in the group’s newsletter as well as being given to new members), please complete the details below. Phone numbers will be given by default but people can opt out of this part. You can also give an (optional) brief description of yourself (60 words or less) - ideas for this description include: your interests, hobbies, occupation (and occupation before you got ME/CFS if different), age, marital status, children, severity, tv/radio/music like, personality type, religion, Full address (if you want people to write to you), gender (if unclear e.g. Pat, Sam, etc.), best time(s) to call, E-mail/website/Twitter/Instagram/Tumblr/blog address, pets, Gaelgóir?, preferences for the sort of people you’d particularly like to hear from (e.g. age bracket), etc. (If you do not wish to have your name on the list or feel unable to be contacted by others, the list will still be available to you should you need support or a chat with someone) Names: 1 (and optional description) ....................................................................................................... ................................................................................................................................................................... ................................................................................................................................................................... 2): ............................................................................................................................................................. 3): ........…
@miskaknapek.bsky.socialOct 7, 2026, 3:49 PM

I came across a paper where researchers had asked German medical students whether they had (gotten) enough knowledge to diagnose (let alone treat) #mecfs

81.6% said they felt they didn't know enough about Mecfs.

link.springer.com/article/10.1...

Photo, no description
@meassociation.org.ukOct 7, 2026, 3:31 PM

ME Connect is our free, confidential support service offering a safe, understanding space where you're truly listened to. Whether you need someone to talk to, emotional support or simply a compassionate ear, we're here for you.

#MEConnect #MECFS

IMAGE DESCRIPTION: Photo of a man in bed, on his phone. Wording reads: "I was so happy to talk to someone who understands the condition." MEA and ME Connect logos.
@thenorfolknaturist.comOct 7, 2026, 3:22 PM

My partner drove me to a quiet and secluded FKK beach when I was feeling unwell. Everything about it was perfect. The light, the water, the location

Nature really is the best medicine, I started feeling better immediately

#naturistlife #skinnydip #chronicillness #mecfs #healthybynature

Theo swims in a bay on an FKK beach. It is wide ope with mountains either side, the sun is setting in the distance and golden light floods water and surrounding area. Theos head is visible in the centre of the shot in the water. The water is crystal clear, rocks are visible beneath it, the water is mostly still with light texture across the surface which is refracting the light on to the seabed. Blue skies above, fine pebbles on the beach. Theo had been feeling very fatigued, bit this scene was perfect medicine.
@openmedf.bsky.socialOct 7, 2026, 3:10 PM

A single-focus study often misses the bigger picture in multi-system diseases, so multi-omics better helps researchers connect the dots across biology, moving us closer to understanding the root causes of #MECFS.

@kimvr.bsky.socialOct 7, 2026, 2:53 PM

Stop using your energy to worry. Use your energy to believe, create, love, grow, glow, manifest, and heal. #recovered #Anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia

Photo, no description
@tomkindlon.bsky.socialOct 7, 2026, 2:17 PM

New CDC study

Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults

www.jpeds.com/article/S002...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Objectives To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study. Study design Baseline cross-sectional data from adolescents aged 10–17 years enrolled in MCAM were analyzed. Standardized measures included the Short Form-36 (SF-36v2), CDC Symptom Inventory (CDC-SI), Multidimensional Fatigue Inventory (MFI-20), and selected domains of the DePaul Questionnaire. Descriptive statistics characterized the pediatric cohort and bivariate analyses compared adolescents with adults enrolled in MCAM. Results Forty adolescents (mean age 15.3 years; 52.5% female) were included. Mean illness duration was 4.0 years. Educational disruption was substantial: 64% received homebound or homeschool instruction, 89% missed school because of illness, and participants missed a mean of 10.8 school days during the preceding month. Physical health-related quality of life was substantially impaired. Persistent post-exertional malaise (PEM), unrefreshing sleep, fatigue, and neurocognitive symptoms were common. Compared with adults (n = 595), adolescents had shorter illness duration and better physical functioning, vitality, and social functioning, whereas mental health scores were similar. Adults reported greater burden across several physical symptom domains although many between-group differences were small. Conclusions Adolescents with ME/CFS experience substantial multisystem symptom burden, impaired physical functioning and educational disruption. Many core clinical features were similar to those in adults, supporting the need for early recognition and appropriate clinical and educational support.
@persicoprincess.bsky.socialOct 7, 2026, 2:13 PM

Wenn ich ein neues Medikament einnehme, denke ich inzwischen fast sofort „hoffentlich macht es müde“. Denn dann kann ich vielleicht mal Einschlafen, Durchschlafen, Ausschlafen. Das ist sonst wegen massiver Schlafstörung durch #MECFS kaum möglich.

@toriabanks.bsky.socialOct 7, 2026, 1:14 PM

It’s interesting because I’ve been grateful for him taking on the #MECFS scandal, including just this week - which is an object lesson in all channels ‘fuck you, you don’t matter, we’re never wrong and if you object you’re an extremist’ yelled at the powerless in a posh voice.

@arizona10238417.bsky.socialOct 7, 2026, 12:31 PM

#MCAS

Oh, da bin ich raus

#LasDasMalDenHausarztMachen

#MECFS #Chefsache @oezdemir.de

Es ist grausam, wenn ein Mensch sein Leben immer weiter verliert und die Angehörigen eine nichtvorhandene Versorgung vergeblich suchen @zdfmagaz.in @zdfde.bsky.social @jokoundklaas.bsky.social