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@tomkindlon.bsky.socialSep 7, 2026, 10:37 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 8:35 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 7:23 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 7:03 PM

PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research

Links
www.actionforme.org.uk/register-for...

www.actionforme.org.uk/wp-content/u...

www.tickettailor.com/events/unive...

Screenshot from latest Science for ME update

#MEcfs #PwME #CFS

PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research. 9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available. "The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities." Article | Preliminary programme | Registration | Thread
@crashmargulies.bsky.socialSep 7, 2026, 6:59 PM

New Essay: New Essay: Post-Exertional Neuroimmune Exhaustion and Living Below the Spoon Theory

Read the whole thing here: crashmargulies.dreamwidth.org/35286.html

Or this thread for a preview: 🧵

#PEM #PENE #pwME #MyalgicE #LongCOVID #MEcfs #PostExertionalMalaise

@tomkindlon.bsky.socialSep 7, 2026, 6:29 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 5:18 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 3:48 PM

The union news site Arbetsvärlden in Sweden writes about the hardship patients with ME face when assessed for being fit to work

Google translation links
translate.google.com/translate?sl...

www-arbetsvarlden-se.translate.goog/forsakringsk...

Screenshot from Science for ME update
#MEcfs #PwME #CFS

Sweden The union news site Arbetsvärlden writes about the hardship patients with ME face when assessed for being fit to work in a system with little understanding of ME and fluctuating illnesses. Johan Helander tells his story of being deemed fit to work despite his doctor saying he may never be able to work again. After six years of sick pay, all financial support has now stopped. In a follow up article the Swedish Social Insurance Agency say that they make a broad consideration in these cases. Article (Swedish) l Article (Swedish) l Thread
@tomkindlon.bsky.socialSep 7, 2026, 3:10 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 2:02 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 1:36 PM

ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS

meassociation.org.uk/wp-content/u...

s4me.info/threads/uk-b...

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS

UK BACME ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS. A detailed report including quotes from clinicians, carers and people with ME/CFS. The report concludes with a list of recommendations including nutritional screening; development of standardised clinical guidance; and individualised ME/CFS-informed implementation. Report | Thread
@tomkindlon.bsky.socialSep 7, 2026, 12:54 PM

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.
@tomkindlon.bsky.socialSep 7, 2026, 11:10 AM

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.
@tomkindlon.bsky.socialSep 7, 2026, 10:15 AM

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.
@tomkindlon.bsky.socialSep 6, 2026, 10:59 PM

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.
@ace9801.bsky.socialSep 6, 2026, 10:08 PM

I continue to question what the end goal may be in the forces that contrive to bury the realities and implications of COVID and LC especially when the fallout is so much bigger than any one of us!

#LongCOVID #PAIS #IACCIs #MEcfs #pwME

@tomkindlon.bsky.socialSep 6, 2026, 9:36 PM

2/
German:
www.openpetition.de/petition/onl...

Google translation
www-openpetition-de.translate.goog/petition/onl...

#MEcfs #PwME #CFS #mecfs_de