#CFS is an active hashtag on Bluesky. In the last 30 days, 24 people shared 224 posts with it — around 7 a day. Activity is up 49% versus the previous week, peaking on Sep 6 with 15 posts.

Posts with #CFS

Tom Kindlon

@tomkindlon.bsky.social

2 days ago

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter. Read more: bit.ly/4h5GsH5 #mecfs #cfs #pwme

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Epistemic and affective injustice in ME/CFS
Epistemic injustice When people with with ME/CFS describe their symptoms, they are all too often not believed, or medicine and society lack the right concepts to understand their experience.
For example, for those with ME/CFS, symptoms worsen after exertion, but instead of being taken seriously, they may be wrongly told they are anxious, inactive, or not trying hard enough.

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Affective injustice This is the harm done when a person's anger, grief, fear, or frustration is dismissed as inappropriate, exaggerated, or unreliable, rather than understood as a reasonable response to their situation. o Here, people with ME/CFS can be harmed not only when their symptoms are doubted, but also when their emotional responses to that doubt are judged or controlled by others.

INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942
Walter S. Medicine, Health Care and Philosophy. (2026)

1 24 44

Tom Kindlon

@tomkindlon.bsky.social

2 days ago

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS. Read more: bit.ly/4irwxOp #mecfs #cfs #pwme

CHow societal expectations of recovery an lead to harm for people with ME/CFS
Zoe Sirotiak, who lives with ME/CFS and is also a researcher and physical therapist, wrote a paper about how the expectation that people with an illness should get better, return to their normal lives, or grow from the experience can be harmful to people with ME/CFS.
Notably, this "myth of recovery" can:

Exclude people who remain ill

Wrongly Distract from suggest gaps in recovery is research, about attitude healthcare and or effort social support
INFORM. INFLUENCE. INVEST. RESEARCH UK SC0.942
Sirotaik Z. Disability & Illness (2026)

0 16 38

Tom Kindlon

@tomkindlon.bsky.social

almost 2 years ago

It's been great to see the influx of people from the ME/CFS and long Covid community in the last week. Here's a starter pack by @chromatowski.bsky.social that's worth checking out: bsky.app/starter-pack... It lists interesting people to follow and also has a feed #MEcfs #CFS #PwME #LongCovid 1/

Accounts and feeds related to ME/CFS, Long Covid and related conditions and topics. (FAQ: if you are hoping to be listed on a starter pack, unfortunately the format has a cap of 150 accounts and this pack has hit that, so I recommend creating another pack to cover more of the community!)

24 101 321

Tom Kindlon

@tomkindlon.bsky.social

3 days ago

🧵 From @meresearchuk.bsky.social Sleep dysfunction can be a deeply isolating symptom, shrinking individuals' daily functional hours. The symptom burden & ripple effects can impact mental health. We urge anyone in distress to consider reaching out to appropriate organisations #MEcfs #PwME #CFS 1/

Impact of sleep dysfunction in ME/CFS
"It makes all other symptoms (especially cognitive problems) so much worse and everything so much more difficult. It's extremely difficult to plan anything because I've no idea when I'll be able to sleep or not."
Response from ME Research UK Symptom Saturday Sleep Dysfunction Survey
aft R E SiEjAr H SCO36942
INFORM. INFLUENCE. INVEST.

3 13 39

Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

Well done to Mark Vink on getting another piece published: this one has the provocative title, "CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that" www.frontiersin.org/journ…. #MEcfs #CFS #PwME

www.frontiersin.org

Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that

The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...

12 82 221

Amber

@flowergirl78.bsky.social

almost 2 years ago

Yes. 🦋 💜 #chronicillness #chronicpain #fatigue #spoonie #spooniewarrior #fibromyalgia #brainfog #CFS #FMS #disabled

13 43 205

Patrick - Here for the craic❗️🤷🏼‍♂️😉

@paddyopatrick.bsky.social

1 day ago

I missed your post yesterday but having been crushed by CFS, robbed of a couple of years of my life, having to reboot my whole mindset and against the odds make a full recovery My heart goes out to anyone suffering from #CFS / #ME

0 3 20

Tom Kindlon

@tomkindlon.bsky.social

15 days ago

10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS

Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire 1 , Tom Kindlon 2 , Robert Courtney 3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 , Bruce Levin 7
Affiliations Expand

PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.

5 74 164

Tom Kindlon

@tomkindlon.bsky.social

3 days ago

2/ What sleep dysfunction in ME/CFS feels like #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

What sleep dysfunction in ME/CFS feels like insomnia jet lagged torture feeling unrefreshed after sleep cannot sleep easily despite exhaustion fragmented sleep "tired but wired" unpredictable sleep patterns hypersomnia frustrating feeling hungover/drunk amplified symptoms lonely poisoned feeling like a zombie Recurring themes from ME Research UK Symptom Saturday Sleep Dysfunction Survey INFORM. INFLUENCE. INVEST.

1 7 23

Tom Kindlon

@tomkindlon.bsky.social

3 days ago

3/ What sleep dysfunction in ME/CFS feels like #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

SLEEP DYSFUNCTION IN ME/CFS
"...Even if I've slept 'well', the mornings are awful. It takes hours for me to be able to make my brain work, or find words, or reply to texts etc and I feel so tired and foggy. I can't do anything in the mornings which means I miss out on all sorts of things locally which only happen in the mornings..."
ieN R E StrH SCO36942
INFORM. INFLUENCE. INVEST.

3 4 22

Tom Kindlon

@tomkindlon.bsky.social

12 months ago

New Polish study which also involved some UK researchers: "The gut microbial composition is different in chronic fatigue syndrome than in healthy controls" www.nature.com/articles/s41... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Abstract
The pathogenesis of Chronic Fatigue Syndrome (CFS) is yet unknown. This study aimed to assess the gut microbial composition in CFS patients versus in healthy controls (HCs). The composition of fecal bacteria was examined in twenty-five CFS patients and sixteen HCs using Illumina sequencing of 16 S rRNA gene amplicons targeting the V3-V4 bacterial gene regions. 143 (46%) of the microbial genera were found only in the CFS. In addition, the gut microbial composition in the CFS patients contained a much higher proportion of the 10 most commonly found bacteria compared to the HCs group. A significantly lower observed number of operational taxonomic units (OTUs) was noted in CFS compared to HCs (p = 0.045). Significant between-group differences in the gut microbial composition in CFS compared to HCs were noted. The three most discriminating Amplicon Sequencing Variants (ASVs): ASV 191, ASV 44, and ASV 75, were identified as significantly more abundant in the healthy control group compared to the patient group. In addition, the Neural Network (multilayer perceptron) was able to discriminate gut microbial composition from CFS versus HCs with excellent performance (AUC = 0.935). The gut microbial composition is different in CFS patients compared to HCs. Further studies should assess the pathophysiological consequences of these differences as well as the effectiveness of therapies aimed at modifying the gut microbial composition in CFS patients.

8 35 168

Tom Kindlon

@tomkindlon.bsky.social

almost 2 years ago

Congrats to Mark Vink (who is bedbound with ME) for publishing another paper "Confirmed: The Conclusion by NICE that CBT is not an Effective Treatment for ME/CFS; Re-Analysis of a Systematic Review" www.scibasejournals.org/n…. A true hero 👍👏 #MEcfs #CFS #PwME