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
11 146 577
institute-genetics-cancer.ed.ac.uk
Bluesky · Hashtag
#pwME
289
posts · 30d
61
users
10
posts / day
4.7
posts / user
+ 47% vs last week
#pwME is an active hashtag on Bluesky. In the last 30 days, 61 people shared 289 posts with it — around 10 a day. Activity is up 47% versus the previous week, peaking on Jul 13 with 25 posts.
#pwME posts per day (last 30 days)
Related tags
Tags most often used together with #pwME.
Posts with #pwME
Today is the 1-year anniversary of the #DecodeME genetics preprint. It was an emotional day for many including everyone in the team that delivered the project
#pwME #MEcfs @actionforme.bsky.social
institute-genetics-cancer.ed.ac.uk/sites/defaul...
5 21 59
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
4 81 499
“I want to warn those who are working but barely getting by: do not ignore your symptoms, because you risk losing several levels of function. I pushed and ignored my symptoms to the point where I had nothing left. Pacing is so important”
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
1/
3 16 49
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/
ME, Long Covid & co
Starter pack by C.H. Romatowski
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
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...
26 142 305
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 18 260
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
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
chng.it
Can you spare a minute to help this campaign?
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
6 138 252
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.
21 117 251
Behind the videos, this is what 70% of my time looks like right now (4 months micro vascular damage post covid + ME 20 years). It's really hard for us to grasp that we usually witness chronically ill people in their better moments which don't represent the rest of their reality. #pwME
26 22 245
Hello dearest people with ME, and LC-
I am proud of all the little triumphs you have had this year. You have thousands of acts of courage behind your back. One of mine has been getting to that chair to record a video.
Go gently.
#pwME #LongCovid
18 3 236
Hoping for some help from the #ME/CFS community. Pls share
I have #SevereME & am mostly bedridden, in agony, with no doctor.
I’m hoping to raise funds to access private healthcare. I can’t continue to live in so much pain, without any medication.
#pwme #MECFS #ChronicIllness
gofund.me/bfbddc2a5
gofund.me
Donate to Bedridden and in agony, help Emma access treatment, organized by Emma Jane
Hi, I’m Emma. I’m housebound and mostly bedridden with ME/CFS, Fibromyalg… Emma Jane needs your support for Bedridden and in agony, help Emma access treatment
0 2 2
November 2025 expenditure. Apologies for the delay. Better late than never. Thank you, everyone 😘
youtu.be/A9xe_uiePak?...
Gofundme.com/f/save-nevra
Paypal.me/SaveLizNevra
#pwME #severeme
youtu.be
November 2025 expenditure
November 2026 expenditure TEAM NEVRA POSTING ON BEHALF OF NEVRA- it may confuse you as to why we are posting this during a sensitive time but Nevra's request for us has been to be transparent about…
0 0 1
Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME.
Read today:
www.actionforme.org.uk/th….
#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME
2 13 20
2/
From
Recap: Support Group: Navigating Work Loss and Financial Stress
batemanhornecenter.org/wp….
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
batemanhornecenter.org
0 0 15
“I want to warn those who are working but barely getting by: do not ignore your symptoms, because you risk losing several levels of function. I pushed and ignored my symptoms to the point where I had nothing left. Pacing is so important”
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME
1/
3 16 49
Poliomyelitis
or simply polio, is a highly contagious infectious disease caused by three types of poliovirus. The poliovirus is a virus that destroys nervous system causing paralysis.
www.childrenshospital.org….
Myalgic Encephalomyelitis
#pwME
#LongCovid
@longcovidadvoc.com
0 1 3
Nevra is requiring IV infusions and pain injections for longer than we had anticipated. We need to raise additional funds.,The total cost has increased from £122 to £326.41. Every donation, no matter the size, helps so much.
Gofundme.com/f/save-nevra
Paypal.me/SaveLizNevra
#pwME #severeme
0 0 1
I haven't watched yet but I hope you asked her about how government understands how long it takes to, a) develop mental illness; b) recover from it. "Hub" is usually code for minimal intervention.
#pwME are told they are mentally ill only because they have a neglected chronic illness. Aka gaslighted
0 0 5
Medicaid #FrailAndFurious update!
More than 79k comments were submitted.
More than 31k comments posted with more continuing to appear as they are screened.
We’ve spotted several comments using our template!
See next steps & take action: ow.ly/Xnr250Zx96N
#Medicaid #pwME #disability
0 5 9
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