Grilled Cheese

ExploreLog inSign up
Terms of UsePrivacy PolicyCommunity StandardsHelpGet the app

Grilled Cheese is a product of Village Compute

Version devBuilt at: 2026-10-18 01:16:41 EDT

PhotosVideosAllPeople
LatestRanked
Load more
@tomkindlon.bsky.socialOct 16, 2026, 12:32 AM

"The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive: A medical textbook doubles down on misinformation and stigma" by K. Johnstone

mecfs.substack.com/p/the-medica...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive. A medical textbook doubles down on misinformation and stigma K. Johnstone Oct 09, 2026 An important and widely used medical textbook, Kumar and Clark’s Clinical Medicine has been repeatedly criticized for presenting out-dated and harmful misinformation about ME/CFS. There was a petition asking for the textbook to be updated. Now the new version is out - and it’s worse than ever. ME/CFS is wrongly presented as a psychological illness. Patients living with severe chronic illness are slandered as delusional people who merely ‘believe’ that they are physically ill. The ‘information’ about ME/CFS in the textbook is at this point so far from the current medical and scientific consensus that it can no longer be viewed as merely biased or unbalanced. It’s worse than that. It is prejudiced, malicious, and hateful. The choice to include this misinformation constitutes a deliberate act of harm toward people with ME/CFS. It is slander toward an entire group of seriously ill patients, and I look forward to the day when those responsible are held to account.
@tomkindlon.bsky.socialOct 15, 2026, 12:26 AM

Gut Microbiome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Insights into Disease Mechanisms

pmc.ncbi.nlm.nih.gov/articles/PMC...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Image of someone's lower torso with a gut outline with the following text Gut Microbiome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Insights into Disease Mechanisms It is hypothesized that specific disturbances in gut microbiome composition, known as dysbiosis, may compromise the integrity of the intestinal barrier. This consequently leads to translocation of microbial components, which further triggers an immune response and systemic inflammation complicating the clinical presentation of ME/CFS. Furthermore, in terms of the so-called gut–brain axis, microbiome changes may lead to distinct neurocognitive impairments observed in ME/CFS patients. Read more here>>
@tomkindlon.bsky.socialOct 14, 2026, 9:03 PM

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME/#CFS symptoms

#MECFS
1/

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate Sav
@tomkindlon.bsky.socialOct 14, 2026, 12:25 AM

Recording of & notes for MassME: Sunday Conversations – September 2026 “Insights & Inspiration from Support Group Leaders”

Screenshot from @massmecfs.bsky.social Oct newsletter

youtu.be/1H8chnKirvw

massmecfs.org/events/sunda...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Recording Available for September Sunday Conversations Massachusetts ME/CFS & FM Association Sunday Conversations Sunday, September 20, 2026 4:00-5:00pm ET REC Insights and Inspiration from Support Group Leaders The Power of Shared Experience WATCH NOW MassME Click Here for Meeting Resources and Links
@tomkindlon.bsky.socialOct 12, 2026, 12:16 AM

Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED by David Tuller

virology.ws/2026/10/10/t...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Trial by Error by David Tuller Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED A German paper on chronic fatigue syndrome published by Springer Nature contained derogative language about patients. This resulted into a joint statement with objection from many healthcare providers and scientists. It later turned out the characterisations had been added by a psychiatrist who was responsible editor of the project the paper was part of. Article l Thread
@tomkindlon.bsky.socialOct 11, 2026, 1:36 PM

The team at La Trobe University in Australia, including Drs Sarah Annesley & Daniel Missailidis, have published a study acknowledging funding from ME Research UK, which provides evidence of altered lipid metabolism in ME/CFS.

Read more tinyurl.com/yv4mmvtn

#ChronicFatigueSyndrome #MEcfs #CFS #PwME

r 1 Evidence of altered lipid metabolism in ME/CFS J r Researchers at La Trobe University, Australia, I have found further evidence of altered lipid L metabolism in ME/CFS ./ rThe team looked at groups of cells, known as `cel71 lines, that had been replicated from samples taken from 15 people with ME/CFS and 17 healthy controls. •■ L r Results were complex, but overall showed that 1 compared to the cells derived from healthy samples, cells derived from people with ME/CFS L may handle fats and energy differently. rNote: This was a small exploratory study of all female participants 1 meaning more research is needed before firm conclusions can be drawn. OAINFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942 Missailidis D, Armstrong C. & Anderson D. et. al., J Trans Med. 2026;24 (1): 145
@tomkindlon.bsky.socialOct 11, 2026, 12:26 AM

Low Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome

Vasopressin is also known as antidiuretic hormone

www.endocrinepractice.org/article/S153...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone lying, collapsed on sand looking exhausted With the following text LOW VASOPRESSIN IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME In a consecutive series of ME-CFS patients, majority had very low vasopressin levels, relatively high plasma osmolality and low urine osmolality, in absence of overt hypothalamic or hypophyseal pathology. Chronic down-regulation of vasopressin mimicking central diabetes insipidus may contribute to the core symptoms of ME/CFS. Read more here>>
@tomkindlon.bsky.socialOct 11, 2026, 12:20 AM

Does Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Represent a Poly-Herpesvirus Post-Virus Infectious Disease?

www.mdpi.com/1999-4915/17...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Image of a virus with the following text Does Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Represent a Poly-Herpesvirus Post-Virus Infectious Disease? In over half of cases, ME/CFS onset is associated with acute “flu-like” symptoms, suggesting a role for viruses. However, no single virus has been identified as the only etiological agent. This may reflect the approach employed or more strongly the central dogma associated with herpesviruses replication, which states that a herpesvirus exists in two states, either lytic or latent. The purpose of this review is to address the role that abortive lytic replication may have in the pathogenesis of ME/CFS and other post-acute viral infections and also to raise awareness that these syndromes might be poly-herpesviruses mediated diseases. Read more here>>
@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>>
@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, 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, 7:58 PM

3/
This screenshot is from today. My sleep is often longer and a bit more restorative and usually my body battery is lower by the time i go to sleep but the same principle applies.

#CFS #ChronicFatigueSyndrome

@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.