Grilled Cheese

ExploreLog inSign up
Terms of UsePrivacy PolicyCommunity StandardsHelpGet the app

Grilled Cheese is a product of Village Compute

Version devBuilt at: 2026-10-12 04:31:30 EDT

Explore

PostsPeople
LatestRanked
@meassociation.org.ukOct 7, 2026, 3:31 PM

Get in touch today:
0808 801 0484
meconnect@meassociation.org.uk 

#pwME #LongCovid #SevereME

@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.
@chembarathi.northsky.socialOct 7, 2026, 12:13 PM

If anybody is looking for handmade gifts, please do checkout my Ko-Fi shop. There are some crocheted cuteness and lovely handknitted scarves and socks. I am running low on money and health at the moment. So please help me spread the word!!
International Shipping Available
#pwme #bsnm #helpsky🧶

@andrewgiffordphoto.bsky.socialOct 7, 2026, 11:22 AM

If Sharon wasn't independently supporting my living costs it would be a choice between abject poverty and a considerable worsening of ME/CFS disease progression.

NHS and DWP need to better financially support #pwME, immediately doubling/tripling PIP to mitigate the total lack of clinical support.

@tomkindlon.bsky.socialOct 7, 2026, 10:59 AM

Recording of the 24 September 2026 ME Support webinar featuring Chris Ponting @cgatist.bsky.social is up:

www.youtube.com/watch?v=UJYU...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

THE UNIVERSITY of EDINBURGH upport - uest Speaker nt with Chris Ponting ME: ME/CFS & biomarker udies ME Support Navigating ME/CFS and Long COV.
@michaelnobbs.bsky.socialOct 7, 2026, 9:21 AM

A wonderfully smokey grey sky greeted me at my gate this morning as I filmed my #MorningView.

Grey skies always make resting easier, and resting is what I'm going to be doing today.

I wonder what sort of day you're going to be having ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@litsadremousis.bsky.socialOct 7, 2026, 1:15 AM

Hey, kids! Last night I posted my first essay to Substack.

In which I gleefully swing the bat against a medical establishment that has failed so many of us.

#MyalgicEncephalomyelitis #pwME #LongCovid #WriterSky #BookSky

Let’s Do the Time Warp Again
substack.com/@litsadremou...

@minetodo.bsky.socialOct 7, 2026, 12:22 AM

Timely help is so greatly needed this week! 🙏
As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe.
Thank you for your kindness, compassion and help. 💛
#StandByMEcfs #pwME #StillSickStillFighting since 2009
gofund.me/edb78da50 #MEcfs

@tomkindlon.bsky.socialOct 7, 2026, 12:19 AM

3/
An extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

#MEcfs #PwME #epatient #epatients #MyalgicEncephalomyelitis

"I decided to start doing scientific work on ME because I was frustrated with the level of analysis in papers. Sometimes I felt that being a patient and having interacted with many other patients, it gave me insights into other ways of looking at topics and data. I wanted to increase the chances that there would be scientific progress that would help me and other patients and felt I could contribute to scientific discussions. Most of my initial work was in post-publication commentary. I wrote over 100 e-letters on journal websites as well as having 20 letters to the editor published. This was in response to a wide variety of topics but a special interest of mine was non-pharmacological interventions particularly graded exercise therapy and graded activity-oriented cognitive behaviour therapy. (Tom Kindlon)"
@tomkindlon.bsky.socialOct 6, 2026, 6:16 PM

10/
What fatigue in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "Bone crushing. Always. I mean always present. But the intensity fluctuates. But ALWAYS present. When other symptoms of ME/CFS worsen, so does the intensity of fatigue increase...." RESEARCH i (. SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 4:56 PM

9/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "ME/CFS-related fatigue is very different from ordinary tiredness. It feels like my body has an extremely limited amount of energy available, and even very small amounts of physical or mental activity can use up far more energy than they should. It can feel like my whole body is heavy, weak and drained, as though I have run out of fuel. Resting or sleeping does not reliably restore that energy.... RESEARCH UK SCO,6942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 4:28 PM

Norway
Demonstration scheduled for 28th October

www.facebook.com/events/18087...

www.me-foreldrene.no/markering-pa...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #LongCovid @meforeningen.bsky.social

Norway Demonstration scheduled for 28th October at 3:00 PM Three patient organisations — The Norwegian ME Association, The ME Parents, and the Norwegian Covid Association — are organising a demonstration outside the Norwegian Parliament demanding a stop of the planned clinical guidelines for fatigue and ME. They ask for a separate guideline and expertise in healthcare for ME and post-infectious illness with PEM. Digital participation will be possible. Facebook event (Norwegian) l "The ME Parents" website (English translation) l Thread
@tomkindlon.bsky.socialOct 6, 2026, 4:03 PM

8/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS "...My hobbies went one by one, friends disappeared. Cooking, eating, showering, cleaning the house have all been reduced over time. I can rarely cook from scratch now, it's exhausting. I rarely go out and can't go far when I do, I can't drive far any more...." Response from ME Research UK Symptom Saturday Fatigue Survey hel% RESEARCH UK SCO369.42 INFORM. INFLUENCE. INVEST.
@meactnet.bsky.socialOct 6, 2026, 4:00 PM

The 1st webinar in the ME/CFS Exchange Webinar Series is Thursday, Oct. 8 at 1 pm ET.

It will focus on post-acute infection symptoms. Registration required: https://ow.ly/2ABp50ZOPKP

Hosted by NIH NINDS in partnership with MECFSnet.

#NIH #PwME #MECFS

MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed. October 8th at 1 to 3 pm ET. virtual.
@tomkindlon.bsky.socialOct 6, 2026, 3:10 PM

7/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

7/ Impact of fatigue in ME/CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife
@tomkindlon.bsky.socialOct 6, 2026, 3:06 PM

8/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "Exhaustion in my bones. Like walking through treacle...." RESEARCH UK SCO36942 '\ INFORM. INFLUENCE. INVEST.
@meassociation.org.ukOct 6, 2026, 2:16 PM

In the interview, Monbiot says of #pwME “They need more advocates. They need people like you … and they need far more journalists and far more other people, far more politicians supporting them.”

@tomkindlon.bsky.socialOct 6, 2026, 2:14 PM

6/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS "...I had to stop working, that had a huge impact on my mental health, I felt useless. My income and independence were gone and I felt like I wasn't a person who had anything to give anymore. I had to give up sports, hiking and anything that used my energy. My family life suffered, my partner became my carer. I couldn't do many things for my child and felt so guilty that she had a sick parent. Our lives changed from being very active to almost nothing...." Response from ME Research UK Symptom Saturday Fatigue Survey RESEARCH K ,CO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 2:09 PM

7/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "Fatigue in ME/CFS is not tiredness as healthy people experience it. It is not tiredness after a busy day but more like the drained and weakened fatigue that healthy people would feel when they have a dose of flu and they are wiped out with all their strength gone...." 1414 RESEARCH UI SCC,6942 \ INFORM. INFLUENCE. INVEST.
@katybrc.bsky.socialOct 6, 2026, 1:39 PM

Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them

Load more