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@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.
@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

@tomkindlon.bsky.socialSep 6, 2026, 9:31 PM

A German petition states people with ME/CFS should not be obliged to undergo rehabilitation against their will.Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times & has a 30000-signature target

#MEcfs #PwME #CFS
1/

@tomkindlon.bsky.socialSep 6, 2026, 9:02 PM

8/
“No person with a serious disability should have to fight the very systems that are supposed to provide care and protection.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 6, 2026, 7:40 PM

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.
@tomkindlon.bsky.socialSep 6, 2026, 6:42 PM

7/
“even in countries with well-developed healthcare and social systems, many people with ME continue to experience harm because outdated beliefs, lack of training and poor implementation of current knowledge persist.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.socialSep 6, 2026, 5:31 PM

3/

“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

#MEcfs #LongCovid #Pacing #PwME #CFS

On top of this, because conditions like long COVID, ME and dysautonomia, if they are even known to people, are widely misperceived as a bit of non-serious dizziness or tiredness, rest is rarely respected as the critical and often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.
@tomkindlon.bsky.socialSep 6, 2026, 3:48 PM

🧵
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.
@tomkindlon.bsky.socialSep 6, 2026, 3:34 PM

6/

“Research is essential, and we need investment in it. But recognition, education, appropriate accommodations and respectful treatment are measures that can be implemented now. They can prevent additional suffering while science continues to advance.”

#MEcfs #PwME #MyalgicEncephalomyelitis #CFS

@tomkindlon.bsky.socialSep 6, 2026, 3:26 PM

Focuses on ME and other related conditions (dysautonomia, #MCAS & long COVID)

pollypauthor.substack.com/p/the-hidden...

Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

#mecfs #pwme #longcovid #cfs

1/

The Post-Viral Papers The Hidden Burdens of “Unacceptable Illness” Life at the Bottom of Medicine’s Hierarchy Polly Patterson Aug 18, 2026 In 1991, the fantastically named Norwegian sociologist Dag Album coined the term “disease prestige.” In short, this woefully underdiscussed concept describes how medical conditions are informally ranked in a distinct social and professional hierarchy within healthcare. The phenomenon he described is that diseases with well-established treatments and surgical procedures affecting well-understood organs enjoy institutional respect, whereas chronic, multi-system conditions where no simple fix exists are relegated to the bottom of medicine’s social ladder. Of course, this then demotes the patient to the bottom rung, often accompanied by the myth that the latter category is merely debilitating rather than fatal - something that those in our community know is simply untrue. Before diving into the additional burdens carried by those of us with “unacceptable” diseases, it is worth clarifying that this piece is not intended as a clumsy Olympics of patient suffering. It is a sociological analysis of why some chronically ill patients are treated abominably by healthcare, social care systems and wider society, whilst others receive basic institutional support, validation and compassion. This, of course, occurs despite diseases like Myalgic Encephalomyelitis (ME) registering the lowest Quality of Life (QoL) score of any condition studied in a nationwide 2015 PLOS ONE trial. In fact, it scored significantly lower than lung cancer, chronic renal failure, stroke and heart disease.
@tomkindlon.bsky.socialSep 6, 2026, 1:54 PM

🧵
ME Research UK

We are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative.

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

#MEcfs #PwME #CFS #BrainFog

1/

What cognitive dysfunction (brain fog) in ME/CFS feels like cannot concentrate mind blank unable to read paused brain losing words mid-sentence knowing what you want to say, but being unable to access the words unable to follow conversation information too fast to process exhausting using wrong words feeling less intelligent difficulty retaining info Recurring themes from ME Research UK Symptom Saturday MCognitive Dysfunction Survey u, Z`" INFORM. INFLUENCE. INVEST. SCO36,42 111 ■
@tomkindlon.bsky.socialSep 6, 2026, 1:48 PM

ME Research UK:

ME Research UK's August e-newsletter was sent to inboxes throughout the world earlier today.

Not on our list?
Sign up - tinyurl.com/5n94u488 or read online - tinyurl.com/4n4rnpmu

#mecfs #cfs #pwme #MyalgicEncephalomyelitis

@ianmiles.bsky.socialSep 6, 2026, 8:39 AM

pmc.ncbi.nlm.nih.gov/articles/PMC... Guide to home-based care for #ME #CFS relevant for #longcovid Contains info and advice for sufferers, carers, family, professionals - share widely!

@tomkindlon.bsky.socialSep 6, 2026, 12:02 AM

3/
“But the second harm comes from disbelief and invalidation. Instead of receiving understanding and support, many of us encounter questioning, doubt and dismissal. (contd)”

#mecfs #pwme #cfs

@tomkindlon.bsky.socialSep 5, 2026, 8:56 PM

6/

“Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs

@tomkindlon.bsky.socialSep 5, 2026, 8:17 PM

5/
“Documentation is part of that advocacy: clearly recording functional limitations,symptom exacerbation, environmental barriers, & necessary supports can make the difference in whether a patient can receive equipment, home-based services, disability benefits,or appropriate care”
#mecfs #pwme #cfs