#PwME is an active hashtag on Bluesky. In the last 30 days, 65 people shared 403 posts with it — around 13 a day. Activity is up 8% versus the previous week, peaking on Sep 6 with 29 posts.

Posts with #PwME

Tom Kindlon

@tomkindlon.bsky.social

1 day ago

🧵 Being awake when others are asleep, being asleep when others are awake, feeling exhausted but not sleepy, waking up several times a night, waking up in the morning feeling unrefreshed...sleep dysfunction manifests in countless ways in ME/CFS www.meresearch.org.uk/the…. #MEcfs #PwME 1/

What sleep dysfunction in ME/CFS feels like
Responses from ME Research UK Symptom Saturday Sleep Dysfunction Survey
INFORM. INFLUENCE. INVEST.

2 34 100

Hari Conner

@haridraws.bsky.social

over 1 year ago

Hourly comics! It's impossible to talk about my daily life without talking about my health, so they're also disability diaries #HourlyComicDay #HourlyComicsDay #comics #pwME #MEcfs

Sketchy comic reads hourly comics day - aka for me: disabled comics diaries day

If you don’t know me, I’m
- disabled and bedbound
- severe post-viral illness for 9 years
- can’t do 99% of the stuff I could before and still gutted about it.

Medical file -
> moderate-severe ME/CFS nervous system disease that affects many parts of my body
> probably permanent, no real treatment,
> a bit like having flu all the time
> all activity makes it worse, including showering, thinking, sitting up, watching a film etc
(a doctor saying ‘yikes’)

(arrows point to my body) achy. jaw pain from gritting teeth against pain. exhausted. too ill to sit up. brain fog
Me: another beautiful day in the world

11 147 579

COVID Chronicles

@covidchronicles.bsky.social

3 months ago

Day 1369 — Spotted in the wild at a Triathlon/Duathlon this weekend. 💜❤️‍🩹❤️ Next time that little voice tells you nobody cares, remember that the best of us do, deeply. And that they, too, are out there. #LongCOVID #MECFS #pwME

A T-Shirt on a female athlete reads: "Running for my Long COVID friends who no longer can".

4 81 500

Tom Kindlon

@tomkindlon.bsky.social

1 day 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 38

Tom Kindlon

@tomkindlon.bsky.social

about 16 hours 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

K
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.

r
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 19 35

Tom Kindlon

@tomkindlon.bsky.social

about 16 hours 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 13 34

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

Long Covid Advocacy

@longcovidadvoc.com

about 18 hours ago

Amplifying! Excellent news that GM is writing another ME article. If relevant email address below 👇 #pwME #NEISVoid #LongCovid #ChronicIllness

George Monbiot @georgemonbiot.bsky.social

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

0 11 32

Brian Hughes

@bmhughes.bsky.social

almost 2 years ago

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

thesciencebit.net

That BMJ review of Long Covid therapies does not show what it says it does

The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

26 142 304

Vlad Vexler

@vladvexler.bsky.social

over 1 year ago

Taken by ambulance again with worst ever heart chest ME crisis. As I struggle to breathe and the episodes get worse, there are no solutions from NHS or private hospitals. Feeling deeply this nightmare that millions of people with ME and Long Covid face. #pwME

23 18 259

Chris Ponting

@cgatist.bsky.social

almost 2 years ago

A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignor….

theconversation.com

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’

The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.

21 118 255

Patients with Power

@ptswithpower.com

almost 2 years ago

To defend ourselves from medical gaslighting and bad treatment by doctors, patients are told “don’t be afraid to speak up,” “stand up for yourself,” “advocate!” Have you ever had to advocate for yourself in a medical appointment, only to be treated WORSE because of it? #neisvoid #eds #pwme #pots

44 51 254