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@tomkindlon.bsky.socialOct 5, 2026, 10:23 PM

4/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "Like a battery that only partially charges and then drains ridiculously fast. I can feel the energy leave my muscles with every step I take or word I speak...." lit:. C H UK SCO36942 \ INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 10:17 PM

3/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS "I have mild ME. Everyone assumes because it's mild it isn't that bad and in the scale of ME I'm lucky but it has changed my life. I can barely attend college and when I do it makes me very ill. If I go to college I don't have the energy to do anything else really. I can't read regularly and go out with my friends. I don't know if I will ever be able to work. My mental health took a massive hit especially when you watch people your age thrive and be able to do everything they want when you are so often stuck inside...." Response from ME Research UK Symptom Saturday Fatigue Survey RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 9:18 PM

3/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

FATIGUE IN ME/CFS "...Feels like a huge overcoat of concrete is over me..." REM UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 5, 2026, 9:14 PM

2/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

Impact of fatigue in ME/CFS "...My partner finds it difficult to understand how things are for me. There can be tension there - he doesn't want to hear about how rough I feel, or what research has shown, and why I've not unloaded the dishwasher for example, when he's been at work all day...." Response from ME Research UK Symptom Saturday Fatigue Survey INFORM. INFLUENCE. INVEST. RESEA,CH UK SCO,6942
@colleensteckel.bsky.socialOct 5, 2026, 8:19 PM

View from the Trenches of #MyalgicEncephalomyelitis latest news:
-US rule affects ability to import medications
-National Survey on Health and Disability
-Olmstead Act news
-MEGC Fall edition
-Monbiot publishes another article
-ThereForME charity
colleensteckelmeiccinfo.substack.com/p/news-2026-...

@tomkindlon.bsky.socialOct 5, 2026, 8:11 PM

2/
What fatigue in ME/CFS feels like.

#mecfs #pwME #cfs #fatigue #chronicfatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

What fatigue in ME/CFS feels like heavy leaden energy-depleted thinking and concentration affected drained battery not charging properly too exhausted to fulfill basic needs plug pulled weak like a constant flu weighed down by concrete wading through treacle increased gravity feeling bone deep exhaustion Recurring themes from ME Research UK Symptom Saturday Fatigue Survey INFORM. INFIINCE. INVEST. RESEARCH UK SCO36942
@nlizaki.bsky.socialOct 5, 2026, 6:15 PM

This must stop. I'm tired of losing my friends in the ME community to death. I've been tirelessly advocating since 2011, and we've only received crumbs in terms of funding! We don't have decades. We are alive NOW. (2/4)

#SevereME #MildME #MyalgicEncephalomyelitis #MECFS

@mediaactivist.comOct 5, 2026, 3:55 PM

Finally accessed the minutes from last month's APPG on #ME, noting @tessamunt.bsky.social proposing a campaign called "CodeME" encouraging patients to ensure their ME status is correctly recorded in GP systems. Any #pwME know if this already happens and how to go about it? #MyalgicEncephalomyelitis

@litsadremousis.bsky.socialOct 4, 2026, 4:56 PM

When you've been this sick this long, other people's lives can seem so foreign.

A healthy colleague got Covid and couldn't see anyone for two wks and has turned it into a Wagnerian opera.

I feel bad for her--truly--but the other part of me is thinking, "Amateur."

#MyalgicEncephalomyelitis #pwME

@halcionandon.bsky.socialOct 4, 2026, 5:00 AM

I’d really like a chance at life.
I need a stable, safe environment. Without it, I will continue to decline & die.

#MutualAid #ChronicIllness #MyalgicEncephalomyelitis #MECFS #MCAS #POTS #EhlersDanlos #LongCovid #Endometriosis #ChronicPain #Dysautonomia

chuffed.org/project/1619...

@tomkindlon.bsky.socialOct 3, 2026, 6:30 PM

Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜

Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.

#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife

Photo of me and my electric wheelchair
@tomkindlon.bsky.socialOct 3, 2026, 2:35 PM

2/
Photo of Esther Rantzen

#MyalgicE #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of Esther Rantzen
@tomkindlon.bsky.socialOct 3, 2026, 2:30 PM

I thought I would mark Esther Rantzen’s passing.

See image for my thoughts.

May she rest in peace

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

1/

Tom Kindlon's ME CFS & related page: News, Research and more Published by Tom Kindlon(tooltip)Only people who manage this Page can see who's published · about an hour ago · I thought I would mark Esther Rantzen’s passing. I remember sometimes watching “That’s Life” on BBC1 in the 1980s so feel I have known her a long time. I was very grateful when she started raising awareness of ME in the mid-1990s. At that stage, awareness levels were not at the level they are now and it was still quite a controversial condition and diagnosis. I remember in late 1997 or 1998 getting a list of press cuttings from Action for ME and a large percentage of them (maybe 35-40%) involved her! She had had huge success getting coverage of the illness. I imagine she helped many get diagnosed as well as helping in other ways. 1996 is when my mum and I started raising awareness and understanding of ME in Ireland, where awareness levels were a lot lower than in the UK. We were very grateful for her doing a long interview on Irish national radio, the Pat Kenny Show if I remember correctly. There was also a large feature in an Irish national newspaper, I think the Sunday Independent which had the largest readership then (around 1 million). I think she would have kept at it but it was Emily (her daughter) who didn’t want all the focus. I remember she quoted something her brother said that she was a grade D celebrity cripple. I disagreed with some of the things Esther Rantzen said in subsequent years e.g. about LP. But I will be forever grateful to her for her earlier campaigning work for ME. May she rest in peace.
@carasutra.bsky.socialOct 3, 2026, 8:48 AM

Rest on the sofa today. Properly, not like yesterday 🫣 #iykyk

Feeling rough and I need looking after 🥺

#health #illness #COVID #fatigue #perimenopause #menopause #myalgicencephalomyelitis #chronicillness #spoonie

@jennmeagher.bsky.socialOct 3, 2026, 1:36 AM

Survey still open for those who started but were unable to finish. Pls consider completing yours if capacity allows 🙏🩵

It would be a pity to waste that energy expended and precious data 📊

🎯Let’s hit that target of 2000 respondents❗️
#MyalgicEncephalomyelitis #LongCovid

@irishmecfsassoc.bsky.socialOct 2, 2026, 6:54 PM

2/
Longer description.

The plays can be wall watched for free here www.youtube.com/watch?v=IYID...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

"What about M.E.?": 4 Short Plays About Myalgic Encephalomyelitis (Culture Night 2026): We in the Irish ME/CFS Association were asked to put someone forward for a post-show discussion panel. Association secretary, Orla Ní Chomhraí, kindly agreed. Here is a photo we have just received of the event. From left: Orla Ní Chomhraí, Jacinta Fay & Aoife Delany Reade (all Association members). Jacinta & Aoife were both significantly involved creatively with the plays. Áine O'Hara also took part in the panel discussion with recorded responses to facilitate her disability. The plays can be watched for free here https://www.youtube.com/watch?v=IYIDTKY9oAA
@tomkindlon.bsky.socialOct 1, 2026, 6:48 PM

This is up to 223,000 views now

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS

@tomkindlon.bsky.socialOct 1, 2026, 6:40 PM

(Santa Rosa, California, USA)
"Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?"

#MEcfs #PwME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @sunsopeningband.bsky.social

Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head? If you are a woman between the ages of 18-65 and you have myalgic encephalomyelitis (ME) or you are healthy, you may be eligible to participate in a study. A Non-Invasive Way to Measure Blood Flow to the Head If you are eligible and agree to participate in the study, you will answer three questionnaires involving more about you, your signs and symptoms, and how well you can think and pay attention. This is a two-day test involving two different research sessions. During each session, you will do a maximal cardiopulmonary exercise test involving a stationary cycle. Before each test, you will complete a NASA Lean Test. Throughout the study, you will wear an earpiece that measures the blood going to your head. An honorarium is available to participants. For more information, and to participate, please contact info@workwellfoundation.org or tdavenport@pacific.edu. Location Workwell Foundation in Santa Rosa, California Are you eligible? A woman between the ages of 18-65 years Have ME Cleared by a medical provider to complete cardiopulmonary exercise testing If you aren't sure, a screening process is provided as part of the study If you're unsure if you meet the requirements, call or email the study's principal investigator: Todd E. Davenport, PT, DPT, PhD, MPH, OCS Professor Department of Physical Therapy University of the Pacific (209) 946-3159 tdavenport@pacific.edu
@litsadremousis.bsky.socialSep 30, 2026, 7:48 PM

I'm
so
fucking
tired
of
living
like
this.

#MyalgicEncephalomyelitis #pwME

@mediaactivist.comSep 29, 2026, 11:20 AM

#MyalgicEncephalomyelitis #ME #ME/CFS #pwME #PublicInquiryNow

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