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@joyelephant.bsky.social Sep 5, 2026, 5:31 PM

239/365 "Brief Respites"
2x3in/5x7.6cm #2026tinyart this is how I feel going from chronic fatigue foggy 🧠 heavy body to brief respites I'm getting with new meds #BlueSkyArtShow #tradart #watercolor #tinyart #smArtist #arttherapy
#mixedmedia52 #cfs #chronicillness

@tomkindlon.bsky.social Sep 5, 2026, 4:37 PM

Recap of " @batemanhornecenter.bsky.social Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

batemanhornecenter.org/wp-content/u...

#MEcfs #LongCovid #PwME #CFS

@tomkindlon.bsky.social Sep 5, 2026, 3:49 PM

Bateman Horne Center @batemanhornecenter.bsky.social on
“Listen. Believe. Do No Harm.”

#SevereME #PwME #CFS #MEcfs

For people with severe ME/CFS, more activity is not always the goal.

Quality care may mean reducing unnecessary exertion, protecting rest and preserving limited capacity for what is essential and meaningful.

In our latest blog, occupational therapist Amy Mooney, MS, OTR/L, shares practical guidance for clinicians and caregivers—including how to break everyday activities into smaller demands and adapt them around what a person’s body can tolerate.

Read the blog: https://bit.ly/4zlv02i

#SevereME #MECFS

@tomkindlon.bsky.social Sep 5, 2026, 3:17 PM

3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@tomkindlon.bsky.social Sep 5, 2026, 1:58 PM

I thought this by @amymooney.bsky.social was very good. Notice the audio version.

"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

batemanhornecenter.org/listen_belie...

#SevereME #MEcfs #PwME #CFS @batemanhornecenter.bsky.social

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Listen. Believe. Do No Harm.
An occupational therapist’s guidance for caring well for people with severe ME/CFS
For someone with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), being sick is a full-time job. Light, sound, conversation, movement, sitting upright, eating, even being asked a question, all of it can cost more energy than the body has to spend. For these patients, healthcare itself can become one more source of exertion.

That was the starting point for Amy Mooney, MS, OTR/L, when she joined Bateman Horne Center’s “Coffee” with a Clinician for Severe ME/CFS Awareness Month. Amy is an occupational therapist and a caregiver herself, and she came with a message she wanted every provider, and every caregiver, to sit with: care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.

Here’s what she shared.

BHC: What do you wish every healthcare provider understood about caring for someone with severe ME/CFS?

@tomkindlon.bsky.social Sep 5, 2026, 10:24 AM

5/
“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed”

#MEcfs #LongCovid #PwME #CFS

Participant shared that they live with ME/CFS and long COVID and, a couple of months ago, became the primary caregiver for their father after he suddenly became incapacitated and bedbound. They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month, teetering on the edge of a crash. Now that he has moved to a rehab center, they have fully crashed, and they are bracing for his return home.

@tomkindlon.bsky.social Sep 5, 2026, 9:54 AM

4/
“I know it’s cliche, but we truly can’t pour from an empty cup.”

#MEcfs #PwME #CFS #LongCovid

@cfscounselling.bsky.social Sep 3, 2026, 2:01 PM

Some things we find (kinda) chic at CFS. Want to be part of the fun? Visit https://thegrandparade.org/location/barrie to join The Grand Parade, support older adults, and embrace your kinda chic side. #HopeLivesHere #CFS

@tomkindlon.bsky.social Sep 3, 2026, 12:52 PM

2/
expert reaction to study investigating shared biological mechanisms between ME/CFS, Long COVID, PTSD, Rheumatoid Arthritis, & Multiple Sclerosis

www.sciencemediacentre.org/expert-react...

Comment: it's great the SMC are consulting a wider range of ME/CFS researchers
#MEcfs #LongCovid #PwME #CFS

@tomkindlon.bsky.social Sep 3, 2026, 12:42 PM

News Release 2-Sep-2026
Scientists uncover shared biology behind profound fatigue in five major illnesses

www.eurekalert.org/news-release...

Paper:
link.springer.com/article/10.1...

UK Times article (paywalled)
www.thetimes.com/uk/healthcar...

#MEcfs #LongCovid #PwME #CFS

News Release 2-Sep-2026
Scientists uncover shared biology behind profound fatigue in five major illnesses
Peer-reviewed / simulation / modelling / people

Peer-Reviewed Publication
University of East Anglia

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A shared biological secret that helps explain chronic exhaustion in conditions including long Covid and PTSD has been discovered by researchers at the University of East Anglia and Oxford BioDynamics.

A new paper published today in the Journal of Translational Medicine reveals striking biological similarities between five major illnesses which until now have largely been viewed as separate disorders.

The findings suggest that chronic fatigue syndrome (also known as ME), long Covid, post-traumatic stress disorder (PTSD), rheumatoid arthritis and multiple sclerosis (MS) may be driven by common underlying mechanisms.

@sirsaa.bsky.social Sep 3, 2026, 12:18 PM

#ME #LongCovid #CFS #PTDS ei ole #ToiminnallinenHäiriö

@tomkindlon.bsky.social Sep 3, 2026, 12:10 PM

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