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@tomkindlon.bsky.social Sep 16, 2026, 3:20 PM

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

What Is Pacing?
Because there are currently no treatments that address the underlying cause of ME/CFS, it is
important for people with the illness to avoid symptom exacerbation, known as Post-Exertional
Malaise (PEM), as much as possible. To do this, they must learn to carefully manage their
limited energy. This strategy is known as pacing.
Pacing means adapting physical, cognitive, and emotional activities, as well as time spent
sitting or standing upright, to an individual's available and often fluctuating level of exertion
tolerance. This can mean having to choose between two completely ordinary activities
because doing both might already trigger a crash.
The more severe the illness, the smaller this margin can become (Bateman et al., 2021;
Hoffmann et al., 2024; NICE, 2021; Seton et al., 2024).
As a result, pacing can look very different from one person to another. For some, it means
reducing work, household responsibilities, or social activities and planning regular rest periods.
For people who are more severely affected, it may involve limiting even basic activities such
as washing, eating, or having short conversations to avoid deterioration. In addition, exertion
limits can fluctuate and are not always predictable. What was manageable on one day may
already be too much on another. Pacing therefore requires continuous adjustment to a person's
current condition.
This is why pacing is both necessary and challenging: it requires people to continually limit or
give up activities despite having the motivation and desire to engage in them.
Pacing is neither exercise training nor a treatment for the underlying disease. Its purpose is
simply to minimize PEM and reduce the risk of further deterioration (Hoffmann et al., 2024).

@tomkindlon.bsky.social Sep 16, 2026, 12:57 PM

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

The United Nations Nelson Mandela Rules are regarded as the international minimum
standards for the humane treatment of people in prison. They define solitary
confinement as at least 22 hours per day without meaningful human contact. If it lasts
longer than 15 days, it is considered prolonged solitary confinement, which should not
be used because of its potentially severe health consequences (The Nelson Mandela
Rules, 2015).
People with ME/CFS are, of course, not imprisoned. However, the illness itself can
make light, noise, touch, or conversation intolerable, and even basic needs may have
to be reduced to an absolute minimum (NICE, 2021). This state can persist for a very
long time: most diagnostic criteria require a disease duration of at least six months,
but many people remain ill for years or even decades (Carruthers et al., 2003).
This comparison helps illustrate something that is otherwise difficult to comprehend:
a person may continue to think, feel, and have interests, while at the same time being
largely cut off from the world and effectively trapped within their own body because of
ME/CFS.

@tomkindlon.bsky.social Sep 15, 2026, 10:01 PM

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

4 images with the following text
Living space always gets smatter Affected individuals lose their world

Isolation can feel like imprisonment within the body.
FIGUE 2 - Severity Levels. Source: Author's own illustration, created with Al assistance.

@tomkindlon.bsky.social Sep 15, 2026, 8:43 PM

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Images with the following text
A Pleasant Afternoon
A Few Hours Later
The Next Day
Duration Uncertain

Even an enjoyable activity can trigger a crash.
FIGURE 1 — Post-Exertional Malaise (PEM). Source: Author's own illustration, created with Al assistance.

@tomkindlon.bsky.social Sep 15, 2026, 7:16 PM

🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by @drmichaelabauer.bsky.social

storage.e.jimdo.com/file/1caec72...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/

"Understanding ME/CFS An Introduction to a Complex Illness"
Dr. med. Michaela Bauer · August 2026

Image of a female reading a book entitled "ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
with 5 thought bubbles showing what she is thinking about

@chronicaction.bsky.social Sep 14, 2026, 11:06 PM

🤯🧵⬇️

#groundzerosyndrome #ME #chronicfatiguesyndrome #gulfwarsyndrome #worldtradecentresyndrome #waterpoisoning #autism #adhd

@tomkindlon.bsky.social Sep 14, 2026, 10:10 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #LongCovid #CFS #ChronicFatigueSyndrome

@tomkindlon.bsky.social Sep 14, 2026, 2:01 PM

2/

“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”

#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@healthylabyrinth.bsky.social Sep 9, 2026, 7:52 PM

Burn your bridges
It's not only about you.
It's for the collective good.
Burn your bridges
The light will be beautiful and it will illuminate evil people who hide in the darkness
#fibromyalgia #chronicfatiguesyndrome #mecfs #autism
www.instagram.com/reel/DdE6su-...

@tomkindlon.bsky.social Sep 9, 2026, 5:36 PM

I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@tomkindlon.bsky.social Sep 9, 2026, 2:53 PM

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I very rarely post on LinkedIn these days but decided to do a longer post today on this.

With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom KindlonTom Kindlon
• YouYou
Assistant chairperson, Irish ME/CFS AssociationAssistant chairperson, Irish ME/CFS Association
8m • 8 minutes ago • Visible to anyone on or off LinkedIn
Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen’s University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was received approximately two decades ago so it is the equivalent of around £9 million today).

The investigators themselves dubbed this the “definitive” trial of graded exercise therapy and cognitive behaviour therapy for CFS.

The data revealed, using the definition for the recovery the investigators committed to in their own published protocol, that neither CBT nor graded exercise therapy led to an increased rate of recovery. The PACE Trial investigators had been desperate for this data not to be released, with over £200,000 spent on legal fees fighting a Freedom of Information request from an Australian patient, Alem Matthees.

Like many of us, Alem was desperate to get the data rather than relying on the very questionnable spin/hype the investigators had been presenting. The PACE Trial investigators had vigorously, successfully fought other FOI requests relating to the recovery data. Alem effectively became an FOI expert and in a David-vs-Goliath battle, he won the case. Unfortunately all the effort badly affected his health and he has been bedbound with very severe ME since.

Anyway the data allowed a team including myself to reanalyse the trial. The image is a screenshot from our main reanalysis paper.

This FOI case and subsequent reanalyses played a significant part in guidelines for ME/CFS being changed in the UK and elsewhere.

A lot more could have been said but I thought I would keep it brief for busy LinkedIn users.

@tomkindlon.bsky.social Sep 8, 2026, 4:06 PM

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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.

@tomkindlon.bsky.social Sep 8, 2026, 2:39 PM

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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.

@tomkindlon.bsky.social Sep 8, 2026, 1:27 PM

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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.

@tomkindlon.bsky.social Sep 8, 2026, 10:01 AM

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.

@tomkindlon.bsky.social Sep 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.social Sep 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.social Sep 7, 2026, 7:23 PM

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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.social Sep 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.social Sep 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.