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Sick Ness

@sickness.bsky.social
161 followers 214 following 90 posts

She / her MIA secondary SEND teacher. Sick. Londoner. Sewer: embroidery, needlepoint (but only for 40 mins a day max 😩) Trapped in an unsuitable home #EndOurCladdingScandal

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Sick Ness @sickness.bsky.social · 27/09/2026
Thank you to @natashadevon.bsky.social and @georgemonbiot.bsky.social (and @abrokenbattery.bsky.social !) Just cried my eyes out for the whole 9 minutes 😭 (will pay for that later) George's knowledge and Natasha's understanding of how invisible we are, as the perfect combo. Can't thank you enough.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
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.
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Sick Ness @sickness.bsky.social · 03/09/2026
I spend all day,every day, stopping myself from doing things I want / need to do. #MEcfs
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 02/09/2026
MERUK invites ppl to take part in a survey abt cognitive dysfunction. They "are collecting anonymous quotes from individuals with confirmed or suspected ME/CFS on various core symptoms to be used at our discretion online, in print, and for internal organisational education." tinyurl.com/psa7npbe
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Sick Ness @sickness.bsky.social · 01/09/2026
This is a waste of a life #MEcfs
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Hazie @hazie.bsky.social · 22/07/2026
The way ‘pacing’ is being framed is dangerously close to ‘self care’ Sometimes symptoms can be managed, sometimes they can’t. No amount of pacing will help if digesting food requires more energy than your body can produce. This is an illness, not a mindset. #MECFS #LongCovid
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Sick Ness @sickness.bsky.social · 16/07/2026
Day 4 of this 8/10 migraine, zero stars do not recommend.
static.klipy.com
Sungwon Cho Says Not Recommended
ALT: Sungwon Cho Says Not Recommended
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Sick Ness @sickness.bsky.social · 13/07/2026
A bee on the echinacea
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Sick Ness @sickness.bsky.social · 02/07/2026
PEM is an assault on the body that needs to be recovered from #MEcfs
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Sick Ness @sickness.bsky.social · 25/06/2026
Life is not life when every day / hour is just another thing to get through. When even pleasurable things are to be paid for after. When every exertion is punishable. #MEcfs
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William Stone @itswilliamstone.bsky.social · 18/05/2026
Tell me you studied mime without telling me you studied mime
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Sick Ness @sickness.bsky.social · 18/05/2026
@mrjamesob.bsky.social big landlords can afford to do repairs, but don't. They have the legal means to avoid it or put it off for as long as possible whilst still collecting rent. See the ongoing cladding scandal. Sorry to break it to you, but housing associations are some of the worst landlords.
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Sick Ness @sickness.bsky.social · 17/05/2026
Happy Blue Sunday to all the #pwME
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Sick Ness @sickness.bsky.social · 11/05/2026
I think this says it all
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Katy B @katybrc.bsky.social · 19/04/2026
For the #ME orgs especially, most recently @meassociation.org.uk #pwME #MEAwareness #MEcfs
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Sick Ness @sickness.bsky.social · 30/03/2026
@mrjamesob.bsky.social the cladding scandal is ongoing. We're still here, stuck in flammable homes with no idea of when they will be remediated. We were told 2020, then 2025. Now no update. Can't sell. Can't move on with our lives.
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Sick Ness @sickness.bsky.social · 21/03/2026
Dizzy day 2
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valebodi.bsky.social @valebodi.bsky.social · 19/03/2026
WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY? YOUR WEEK? YOUR YEAR? #ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone. Practice self care & protect your community. Wear a mask This & more ko-fi.com/saltydyke/shop
Black on white background poster with QR code in the bottom right corner reading:

WHAT IF YOU LOST HALF THE HOURS IN YOUR DAY?
YOUR WEEK? YOUR YEAR?
ME/CFS causes a 50% reduction in pre-illness activity (at least). Every COVID infection increases your risk. It can happen to anyone.
Practice self care & protect your community
Wear a mask
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Sick Ness @sickness.bsky.social · 14/03/2026
Woken at 5am with migraine 😫
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Sick Ness @sickness.bsky.social · 05/03/2026
@sharonhodgsonmp.bsky.social @tessamunt.bsky.social This is exactly why pwME like Savannah are treated so terribly
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Sick Ness @sickness.bsky.social · 26/02/2026
@ashleydaltonmp.bsky.social
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Paula Knight 🎨✒️♿ @paulaknight.bsky.social · 12/02/2026
A metaphor for PEM. New short comic about ME. #Comics #MEcfs #Disability #DisabledArtists #pwME #MyalgicEncephalomyelitis #GraphicMedicine
A four panel comic with a teal background. image is of struggling white skinned hands clasped by a cable tie and resulting injuries. ME is like a cable tie. The harder you fight it the tighter its grip
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Sick Ness @sickness.bsky.social · 10/02/2026
At what point into a 2 week migraine do you just accept that this is how it is now? Is this my new baseline? #Migraine #MEcfs
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Sick Ness @sickness.bsky.social · 06/02/2026
Migraine means I can hear and smell everything (sometimes things that aren't real) . M.E means I dont have the energy to change the litter tray or clean the dripping shower head 😞🤯
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 05/02/2026
#pwme and #pwlc - tried hyperbaric oxygen /oxygen therapy at a specialist centre? Please could you fill in this questionnaire. Positive and negative experiences are all important to share. As always the survey can be saved and continued at another time. Thanks @physiosforme.bsky.social
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Sick Ness @sickness.bsky.social · 05/02/2026
@tessamunt.bsky.social thank you for raising awareness of Savannah’s situation, and severe M.E 💙
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Sick Ness @sickness.bsky.social · 03/02/2026
I am scared that the damage done by the Vyepti infusion is permanent. My M.E and fibro are worse because of the insomnia. The chronic migraine is still as bad but now with the addition of hypnic migraine. #MEcfs #Migraine
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The Canary @thecanaryuk.bsky.social · 30/01/2026
NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why. www.thecanary.co/uk/analysis/...
thecanary.co
London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame
A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.
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Michiel @murtoz.bsky.social · 31/01/2026
Someone has put templates and addresses together to - Email the hospital leadership. - Email the CQC (regulator). - Email local MPs (and your own MP). Please do so if you can! #mecfs #greatestMEdicalScandal
reddit.com
From the cfs community on Reddit: Please help save Savannah (copy and paste template) email QEH, the regulator and MPs about dangerous care of a very severe ME patient
Explore this post and more from the cfs community
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Sick Ness @sickness.bsky.social · 28/01/2026
I am trying to do what's right for my body and my health, but I cannot control the weather 😫
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Emma 🛏️♿🌱☮️♻️🍉 @veganmua.bsky.social · 23/01/2026
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids! Please scroll to the end to copy/paste an email to NHS Trust Chief Executive! Please share! www.thecanary.co/uk/analysis/... #pwME #MECFS #SevereME
thecanary.co
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids
Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
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valebodi.bsky.social @valebodi.bsky.social · 16/01/2026
One of the best and most accurate as well as concise videos on #PEM the core and cardinal symptom of #ME/CFS by The Norvegian ME Association @meforeningen.bsky.social
youtube.com
PEM - post exertional malaise
YouTube video by Norges Myalgisk Encefalopati Forening
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Sick Ness @sickness.bsky.social · 01/12/2023
I made an advent calendar for my husband. Super festive... 🤡🎅🤣
Cardboard box with circus lettering "lucky dip", and an opening in the shape of a clowns mouth.
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Richard Cann @richcann.bsky.social · 23/11/2023
😁🤣
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Sick Ness @sickness.bsky.social · 23/11/2023
Strong rainbow game today
A rainbow on the bottom of a wooden sideboard
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Sick Ness @sickness.bsky.social · 13/11/2023
All of my skin hurts, inside and out. 0/10, do not recommend. #allodynia #PESE
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Sick Ness @sickness.bsky.social · 07/11/2023
Waiting for migraine botox 💉💉 in a brightly lit room full of maskless people 😬😷
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Sick Ness @sickness.bsky.social · 01/11/2023
I am feeling very sorry for myself today. I miss my old job. I feel pointless. Low self esteem is no good for pacing with #MEcfs
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Tom Kindlon @tomkindlon.bsky.social · 01/11/2023
This trial has funding to analyse 25000 samples but is well short. To register/find more info, go to: decodeme.org.uk/portal Please tell others. This article explains why the study is important: www.healthrising.org/blog/2023/10... #MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME
DecodeME Complete the DecodeME Questionnaire by 15th of November 5pm to Become a Participant Just two weeks to go Please highlight this opportunity widely, on and off-line. UK participants only but important to all of us around the world
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Nick Kapur @nickkapur.bsky.social · 29/10/2023
Mundane Halloween is back! Today is the "Mundane Halloween" contest in Japan, sponsored by website Daily Portalz The idea is to dress up as something incredibly ordinary. Here is a thread of some of my favorites from this year!
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Sick Ness @sickness.bsky.social · 29/10/2023
Good news: I slept well. Reality: I slept so soundly my whole body seized up and I couldn't move my torso and needed help to get out of bed. Swings and roundabouts.
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Alex von Tunzelmann @alexvont.bsky.social · 27/10/2023
Can’t get upset about Boris Johnson getting a job on GB News. That’s exactly the kind of low-rent bollocks-talking gig he should have. The thing that was appalling was when he got the job of Prime Minister.
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Sick Ness @sickness.bsky.social · 19/10/2023
Lars (R) is growling in his sleep. Tim (L) is not impressed
2 black and white cats laying on a yellow blanket
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Sick Ness @sickness.bsky.social · 11/10/2023
But I just want to DO THINGS 😞
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Sick Ness @sickness.bsky.social · 04/10/2023
Kicking things off with a bang: guess the emotion of my biscuit.
Pandaro biscuit
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