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@tomkindlon.bsky.socialOct 6, 2026, 3:06 PM

8/
What fatigue in ME/CFS feels like.

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

FATIGUE IN ME/CFS "Exhaustion in my bones. Like walking through treacle...." RESEARCH UK SCO36942 '\ INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 2:14 PM

6/
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 had to stop working, that had a huge impact on my mental health, I felt useless. My income and independence were gone and I felt like I wasn't a person who had anything to give anymore. I had to give up sports, hiking and anything that used my energy. My family life suffered, my partner became my carer. I couldn't do many things for my child and felt so guilty that she had a sick parent. Our lives changed from being very active to almost nothing...." Response from ME Research UK Symptom Saturday Fatigue Survey RESEARCH K ,CO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 2:09 PM

7/
What fatigue in ME/CFS feels like.

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

FATIGUE IN ME/CFS "Fatigue in ME/CFS is not tiredness as healthy people experience it. It is not tiredness after a busy day but more like the drained and weakened fatigue that healthy people would feel when they have a dose of flu and they are wiped out with all their strength gone...." 1414 RESEARCH UI SCC,6942 \ INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 1:35 PM

6/
What fatigue in ME/CFS feels like.

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

FATIGUE IN ME/CFS "Fatigue doesn't even begin to describe it. It feels like a whole body shut down...." MI UK SCO36942 IN FORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 1:23 PM

He is also on IG with the same username

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #meawareness #mecfsawareness

@tomkindlon.bsky.socialOct 6, 2026, 1:08 PM

5/
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 struggled through by pacing myself & a sympathetic system that allowed me up to 6 months unpaid leave , but I couldn't care for my daughters in the way I wanted to" Response from ME Research UK Symptom Saturday Fatigue Survey RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 11:42 AM

4/
Impact of fatigue in ME/CFS

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

Impact of fatigue in ME/CFS "...The change to a completely sedentary lifestyle is a major challenge and I am missing out on my retirement and not enjoying it. I can no longer engage with the same circle of friends. Adjusting to living with the condition is depressing." Response from ME Research UK Symptom Saturday Fatigue Survey RESEARCH UK ,C0692 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 11:30 AM

5/
What fatigue in ME/CFS feels like.

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

FATIGUE IN ME/CFS "Remember the time you were so exhausted you couldn't wait to go to sleep? I feel like that everyday. The difference is that when I wake up, I feel the same. Remember when you came down with the flu and felt like you were hungover, your head throbbed, you had no energy, and everything hurt? I feel like that everyday." RESEARCH UK SCO36942 \ INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialOct 6, 2026, 1:55 AM

Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

www.scifiniti.com/3105-3874/2/...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Habermann-Horstmeier "To date, no causal pharmacological therapy exists for this disease […]. However, early implementation of symptom-oriented management strategies and pacing may improve symptom control, functional status, and quality of life, although no evidence currently demonstrates reversal of the underlying disease process." Article | Thread
@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
@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
@tomkindlon.bsky.socialOct 5, 2026, 7:25 PM

🧵
Ultimately, fatigue in ME/CFS shrinks lives so severely it often takes a devastating toll on mental health. This impact is unsurprising given the immense loss of careers, relationships, hobbies, & independence.

tinyurl.com/fatigueimpac...

#mecfs #pwME #cfs #fatigue #ChronicFatigueSyndrome

1/

Impact of fatigue in ME/CFS "I lost my job, I don't leave my home. I miss appointments. I can't enjoy hobbies." Response from ME Research UK Symptom Saturday Fatigue Survey IC% RESEA,CH U K INFORM. INFLUENCE. INVEST.
@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.
@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 2, 2026, 2:37 PM

Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage

eepurl.com/QShnc4nywr

#MyalgicEncephalomyelitisg #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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