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@tomkindlon.bsky.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.
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Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health.
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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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 8, 2026, 7:05 PM

Hope to see a few of you at this. 👋

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

@irishmecfsassoc.bsky.social Oct 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

@tomkindlon.bsky.social Oct 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)