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@litsadremousis.bsky.socialOct 10, 2026, 3:12 AM

Thanks, everyone! 😎

So far, in four days, I’ve made more $ for my debut Substack essay than I did for any of my WaPo essays, and WaPo paid freelancers a competitive rate.

And I just got asked to guest host a guest pod.

Good week personally🎉

Wish it were good for everyone.

#WriterSky #pwME

@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>>
@minetodo.bsky.socialOct 9, 2026, 9:17 PM

Timely help is so urgently needed! 🙏
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

@anilvanderzee.bsky.socialOct 9, 2026, 7:51 PM

"Twenty years after the start of the largest Q fever epidemic in history, Health Minister Hermans offers apologies on behalf of the cabinet. Tens of thousands of people in North Brabant were infected by nearby goat farms."

youtube.com/shorts/90Xro...

#QVS #QFS #PWME #MECFS #PAIS

@covidchronicles.bsky.socialOct 9, 2026, 5:06 PM

"…the Golden State Warriors have no clue when Kristaps Porzingis will recover from his undisclosed medical issue."

Call it by its name.

There is no cure for
#LongCOVID #MECFS #pwME #MedSky

@whitneydafoe.bsky.socialOct 9, 2026, 3:15 PM

The absolute agony when your mind doesn’t have enough energy to be conscious and process simply being alive and yet you still exist.

————
#mecfs #chronicillness #pwME #LongCovid

@irishmecfsassoc.bsky.socialOct 9, 2026, 10:36 AM

We have given €54,000 from our research fund to the Solve ME/CFS Initiative over the years. #mecfs #pwme #cfs

@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

@michaelnobbs.bsky.socialOct 9, 2026, 8:18 AM

Gloriously wet and grey again today with a sprinkling of sheep. Just the right #MorningView to inspire another day of rest.

Go gently ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@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.
@hydrangea-blues.bsky.socialOct 8, 2026, 11:20 PM

I really appreciate all the #pwME who share their crashes, symptoms and general experiences on here. At least once a week I have a "wait, other people experience that too? I thought that was just me!" moment.

@ahimsa-pdx.bsky.socialOct 8, 2026, 10:35 PM

Thanks for posting, Tom!

A good intro for folks who know nothing about ME/CFS. Let's hope it spreads.

If anyone needs a version with an alt text description (transcript with image descriptions and sound effects) here's the version I posted on Mastodon

disabled.social/@ahimsa_pdx/...

#MEcfs #PwME

@khuruuk.bsky.socialOct 8, 2026, 9:11 PM

Question for #mecfs #longcovid #pwme folks: I have the above and have been seeing a complex care specialist and most things are going fine, I guess. I can work (from home) day to day, with no extras and be ok.

BUT, I’ve started waking in the middle of the night screaming from dreams.

@anilvanderzee.bsky.socialOct 8, 2026, 8:27 PM

Sometimes it can feel like things are standing still. Especially for severe ME patients who can't easily participate in research. But in the Netherlands, they are being included.

archive.today/8DqOm

#pwME #longcovid #QVS #lyme #PAIS #severeME

@swastrosarah.bsky.socialOct 8, 2026, 7:41 PM

Ethically completely unacceptable. Any me or thee conflict in family relationships imposed by medical neglect is a matter for Professional Standards. So where are they?
Infuriating once experienced.
#pwME #LongCovid-30%

@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.
@anilvanderzee.bsky.socialOct 8, 2026, 2:13 PM

Indrukwekkend stuk met Caroline Van Kessel door ellen de visser.

Sorry zou al een beginnetje zijn Sophie Hermans.

#QVS #LongCovid #lyme #postsepsis #pwme #myalgicE #millionsmissing #PAIZ #PAIS #IACI #IACC

www.volkskrant.nl/wetenschap/l...

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