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chronicallykiki.bsky.social
Having my disability cut by nearly £400 is really taking it's toll.
Every little helps. 💖
#spoonie #vtuber #vsky #ffxivstreamer #twitchaffiliate #disability #chronicillness #cfsme #mecfs #smallstreamer #helpsky #mutualaid #maboost #invisbleillness #indievtuber #helpfolkslive
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October 7, 2026 at 6:02 PM
tomkindlon.bsky.social
Two researchers have explored how language can be used to tackle epistemic injustice in healthcare for people with ME/CFS. Read more: tinyurl.com/bdnwr8n6

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps
Researchers have proposed two ways language can be used to tackle epistemic injustice in healthcare: Look closely at the words used in healthcare. Identify language that leaves out people's experiences or reinforces unfair assumptions, then work with people with the disease, their families, healthcare professionals, researchers and policymakers to replace it with fairer and more inclusive language Make language part of how unfairness is investigated and taught. When examining why some people are not heard or included in medical knowledge, also consider how everyday terms and labels shape attitudes and decisions. Help students and healthcare staff recognise and question these hidden assumptions. o O 7 Reminder: Epistemic injustice is the harm done to a person which is related to their own knowledge or personal experience. ■% INFORM. INFLUENCE. INVEST. RESEARCH UK SCO36942 Wallat and Hille. The American Journal of Bioethics (2026)
September 27, 2026 at 4:26 PM
tomkindlon.bsky.social
25 adolescents with ME/CFS found to have slower information-processing speeds, poorer sleep, reduced quality of life, and poorer mental wellbeing compared with 25 healthy controls of the same age.

Read more: bit.ly/4dUz7sZ
Link to research paper: bit.ly/4rzVKc8

#mecfs #cfs #pwme #cfsme
ME/CFS in Adolescence: Effects on cognition and wellbeing 25 young people with mild or moderate ME/CFS aged 12 to 19 years were compared with 25 healthy controls of the same age. Results showed that those with ME/CFS had: Greater symptom burden including poorer sleep and reduced quality of life Slower processing speeds '? Issues with attention and working memory Reduced `psychosocial wellbeing' Note: This study used a small sample size and did not include those with more severe froms of the disease. 4 INFORM. INFLUENCE. INVEST. SCO36942 Chau, T., Josev, E. K., Scheinberg, A., at al. J. Paediatr. Child Health. 2026; 1-13.
September 27, 2026 at 4:22 PM
tomkindlon.bsky.social
‪2/‬

‪George Monbiot writes about the 'astonishing, ongoing mistreatment of people with ME/CFS.' ‬

‪I join him in asking you to, '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.'‬

‪ #CFS‬ #MEcfs #PwME #CFSME
September 24, 2026 at 9:54 PM
msreadsalot.bsky.social
I loved the moment she, as her character, said she had M.E. and that it was real despite what anyone, even her Dr said. 18 yr old me sat and cried, as I’d been ill for 4 yrs with M.E. (Now CFSME) and every Dr in the health centre was openly scornful of my ill health. I rewatched 🔂.
💙
September 16, 2026 at 11:38 PM
tomkindlon.bsky.social
10/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "It is like my IQ dropped 40 points. I used to be intelligent, but now I don't understand simple things anymore. I feel so stupid and insecure because of this. I have to check everything I do to see if it is correct." R ElidU CH SCO36942 INFORM. INFLUENCE. INVEST.
September 8, 2026 at 4:06 PM
tomkindlon.bsky.social
9/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "I lose words - just can't find them. I also lose the ability to form sentences and speak properly when I've "overdone' it. Overdoing it is always something very small - like talking too long with friends or standing up too long washing-up etc...." Lith RESLEJAIICH SCO36942 INFORM. INFLUENCE. INVEST.
September 8, 2026 at 2:39 PM
tomkindlon.bsky.social
9/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "My PhD and academic career are on long term hiatus because of ME/CFS, and one of the biggest factors is the brain fog. I cannot properly concentrate on anything that requires actual brain input for more than 20 minutes before both my mind and body shut down and I am useless for hours following..." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey aldrA RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 8, 2026 at 1:27 PM
tomkindlon.bsky.social
8/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS R6IESOArH SCO36942 "Head full of cotton wool." INFORM. INFLUENCE. INVEST.
September 8, 2026 at 10:01 AM
tomkindlon.bsky.social
8/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "My family are used to it, after 20 years. They just help me as much as possible. I am very grateful for them. If I am out, it is more obvious that I struggle. When I talk to people, and can't find words, or say something wrong, I get looks of pity, or confusion. I really don't like the looks of pity." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey tri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 10:37 PM
tomkindlon.bsky.social
7/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "Sometimes it's like an invisible pause button has been pressed in my brain, and I just can't think anymore. Other times it's like a sense of static in my brain, and I can't think clearly until I sit or lie down to recover. If I don't rest my brain, it leads to me stuttering and or increased stilted speech..." 611% R ES,EjAik C H SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 8:36 PM
tomkindlon.bsky.social
7/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "Since it's not measurable and changes day to day or hour to hour working is not available where you can call in without advance warning because your brain is on hiatus. It often makes me feel stupid when I'm anything but..." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey 611% RESiEjAr H SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 7:23 PM
tomkindlon.bsky.social
6/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "Slow, fuzzy feeling. Like wading through treacle. Forget basic things” INFORM. INFLUENCE. INVEST.
September 7, 2026 at 6:29 PM
tomkindlon.bsky.social
6/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "... I'd been an artist all my life and suddenly I couldn't draw! I was horrified. Then I discovered I couldn't read a book after being an avid reader all my life. Friends didn't understand, and I couldn't explain how I felt. I'd nothing to compare it to. I lost friends and relatives because I hadn't the wherewithall to join in." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey gilh RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 5:18 PM
tomkindlon.bsky.social
5/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "Consider my brain the British Library, filled with loads of knowledge and information. On a good day I can access the lot, know where everything is, complete tasks, read, and be fully present. On an offish day the catalogue is missing. I know the information is in there, I just can't find it. On an badish day the library is in another language I don't understand. I can't translate the questions let alone find the answers. On a really bad day, I'm locked outside." aft RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 3:10 PM
tomkindlon.bsky.social
5/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "Couldn't do my job that I loved. It nearly broke my heart to have to get Medical Retirement. For some reason, I just couldn't do what I'd always done before with no problems...." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey hill% R E SiEjAr H SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 2:02 PM
tomkindlon.bsky.social
4/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "It feels like my brain just stalls. I can know something, sometimes something I know very well, but I can't access it or put it together. I lose what I was thinking about halfway through a thought..." REsofir SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 12:54 PM
tomkindlon.bsky.social
4/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "Couldn't do my job that I loved. It nearly broke my heart to have to get Medical Retirement. For some reason, I just couldn't do what I'd always done before with no problems...." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey hill% R E SiEjAr H SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 11:10 AM
tomkindlon.bsky.social
3/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "Words or phrases that I know well don't come to mind. It's as if a blank wall comes down and says 'no more'..." RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 7, 2026 at 10:15 AM
tomkindlon.bsky.social
3/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "Cannot socialise in a group. Cannot drive" Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 6, 2026 at 10:59 PM
tomkindlon.bsky.social
2/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
Impact of cognitive dysfunction (brain fog) in ME/CFS "I was a lawyer, but I can no longer work due to the cognitive dysfunction from ME/CFS and POTS. Life admin (health, parenting, finances etc), once the footnote at the end of each day, is now my full-time, unpaid job. Yet, I'm still drowning because my brain doesn't function efficiently enough ...." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey larik RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
September 6, 2026 at 7:40 PM
tomkindlon.bsky.social
🧵
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

1/
Impact of cognitive dysfunction (brain fog) in ME/CFS "I'm just about to lose my job. I haven't been able to attend for months. I used to be a multi tasking, problem solving, target meeting, very hard worker. Now I can barely coordinate my medical appointments or reliably string a sentence together." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey R E SiEjAit C H SCO36942 INFORM. INFLUENCE. INVEST.
September 6, 2026 at 3:48 PM
chronicallykiki.bsky.social
Got up with the intention of streaming, but apparently just taking the trash out, and playing with Cookie, has depleted my mana.
Back to bed I go... :/
#kikirl #spoonie #nospoons #chronicfatiguesyndrome #mecfs #cfsme #chronicillness #disability #invisbleillness #imsofukkingtired
September 3, 2026 at 4:50 PM
tomkindlon.bsky.social
4/
Comment on my FB page:

“I’m a patient advocate for the FRIENDS study and assisted in developing the patient protocols.
[..]
They are long days but it has been broken up to allow some rest and the most physically demanding part is an optional extra.”

#CFS #LongCovid #MEcfs #POTS #PwME #CFSME
September 3, 2026 at 12:10 PM
metaphysician.bsky.social
Feels like everything got a lot worse when I became too weak to stand most of the time. Every symptom of illness feeds into another. Learned recently that sitting/lying down impacts ADHD brains-tricks it into giving up on being productive at all.

But thanks to CFSME, I can't even keep my head up...
August 29, 2026 at 7:42 PM