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
@tomkindlon.bsky.socialOct 10, 2026, 2:09 AM

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed

www.theguardian.com/commentisfre...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone looking pensive with the following text Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds. Read more here>>
@nlizaki.bsky.socialOct 9, 2026, 9:46 AM

1/3 Whose life is worth saving, and which parts of the world deserve advocacy?

Check out this video by @ horriblemeanbadwoman on Instagram and Tiktok

#MECFS #Disability #pwME #MyalgicEncephalomyelitis

@tomkindlon.bsky.socialOct 9, 2026, 12:19 AM

"The survey has identified multiple different ways that psychologists can potentially give that support & help people with ME/CFS"

Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update)

meassociation.org.uk/wp-content/u...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Welcome to the third British Psychological Society ME/CFS Guidelines update. We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support. The survey has identified multiple different ways that psychologists can potentially give that support and help people with ME/CFS: • Build trust: by believing people, listening compassionately, respecting lived expertise and taking limits seriously. • Support life with ME/CFS: including grief, identity change, loss of autonomy, loneliness, uncertainty, hope and changed relationships. • Support pacing: by helping people recognise limits, plan around exertion and reduce guilt, shame, self-blame or pressure to push through. • Adapt care: so psychological support is accessible, paced, flexible and appropriate for the person’s severity and energy limits. • Support mental health safely: by adapting work on anxiety, depression, trauma or other difficulties so ME/CFS symptoms are not misinterpreted. • Work with wider systems: including families, carers, schools, employers, healthcare, benefits, social care and voluntary-sector support to help support and educate others. • Reduce harm: challenge psychologization, coercion and patient blaming. Avoid minimising comments and inappropriate pressure to increase activity. - Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health. - Signposting to resources: help with practical problem solving and system navigation, including benefits, social care, mobility aids, workplace adjustments, education, housing and finances where appropriate.
@tomkindlon.bsky.socialOct 8, 2026, 7:05 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

@irishmecfsassoc.bsky.socialOct 8, 2026, 6:36 PM

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, October 23

Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...

Carers/parents/similar welcome.

#MEcfs #LongCovid #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM, Friday, October 23 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Host: Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo
@tomkindlon.bsky.socialOct 8, 2026, 3:34 PM

4/
Another extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" by @chloedecanson.bsky.social

#MEcfs #PwME #CFS #epatient #MyalgicEncephalomyelitis

Lay scientists do not merely criticise existing institutional research on the disease, but also produce their own. In this way, they produce not only extitutional, but also what they have called patient-led and what we might call more generally lay-led science (McCorkell et al., 2021). They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, and conceptual-definitional groundwork, which they publish in scientific journals.30 I devoted considerable time and energy in writing a narrative review of the reporting of harms associated with graded exercise therapy and cognitive behaviour therapy in ME/CFS. This included collating data from patient surveys, data which generally had never been submitted to the peer-reviewed literature. I subsequently published other papers on the topic of the safety of graded activity therapies and harms reporting, along with reanalyses of the PACE Trial, a major UK trial which was designed to be the definitive assessment of CBT and graded exercise therapy for CFS. (Tom Kindlon)
@tomkindlon.bsky.socialOct 8, 2026, 2:45 PM

New from the US

searchMECFS: An Online, Interactive Platform to Facilitate Secondary Use of Biospecimens and Associated Research Data From Myalgic Encephalomyelitis Studies

doi.org/10.3768/rtip...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating disease affecting multiple body systems, with no established biomarkers for diagnosis or treatment. This publication introduces searchMECFS, a free, interactive online platform developed by the Data Management and Coordinating Center of the ME/CFS Research Network, with funding from the National Institutes of Health. The platform’s purpose is to facilitate the secondary use of biospecimens and associated research data from ME/CFS clinical studies by improving accessibility, visibility, and sharing of these resources. Currently, searchMECFS facilitates access to biospecimens and associated data from two studies: The Chronic Fatigue Initiative study, funded by the Hutchins Family Foundation, and the Multi-Site Clinical Assessment of ME/ CFS study, funded by the Centers for Disease Control and Prevention. Users can query participant demographics and clinical information and request available biospecimens through an application process. Eight specimen types are currently available, though availability varies by study. The results highlight a case where a researcher used the searchMECFS platform to identify 40 serum samples, which contributed to published research on circadian rhythm disruption in ME/CFS. searchMECFS aims to accelerate scientific discovery within the ME/CFS research community by improving biospecimen utilization, fostering data sharing, and supporting collaboration.
@tomkindlon.bsky.socialOct 8, 2026, 2:13 PM

From the popular Diploma Duck account on IG, FB and probably elsewhere

“ME/CFS (explained by ducks)” (58 seconds)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM

3
@tomkindlon.bsky.socialOct 7, 2026, 10:31 PM

6/
Some people with ME/CFS complain they can feel groggy in the morning. But maybe rather than fight, it could be welcomed as an opportunity to get good rest?

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@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

@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 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

@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): ........…
@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.
@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.
@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...

@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
Load more