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@meassociation.org.ukOct 6, 2026, 2:16 PM

In the interview, Monbiot says of #pwME “They need more advocates. They need people like you … and they need far more journalists and far more other people, far more politicians supporting them.”

@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.
@katybrc.bsky.socialOct 6, 2026, 1:39 PM

Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them

@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.
@chembarathi.northsky.socialOct 6, 2026, 11:40 AM

I have been trying out different strategies for reels in instagram. It is insane how the algorithm suppresses certain videos like asking for help even when the initial reaction is good and people kept watching it. I am not sure how to survive and what is left for me to try! #pwme

@chembarathi.northsky.socialOct 6, 2026, 11:35 AM

If anybody is looking for handmade gifts, please do checkout my Ko-Fi shop. There are some crocheted cuteness and lovely handknitted scarves and socks. I am running low on money and health at the moment. So please help me spread the word!!
International Shipping Available
#pwme #bsnm #helpsky

@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.
@michaelnobbs.bsky.socialOct 6, 2026, 10:37 AM

I'm late with today's #MorningView. I'm very tired and my gate felt a long way from my bed, but I'm pleased to have made it out here to see the sheep 🐑🐑🐑🐑🐑🐑

Wishing you as gentle a day as you need ❤️🐌

#MECFS #pwME #Wales #CreativeHabit

@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 6, 2026, 12:27 AM

From Norway

The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS

The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities — Størdal and Iversen "This article explores how primary caregivers of people with severe ME experience combining work with their extensive caregiving responsibilities." Article | Thread
@phillyphile215.bsky.socialOct 6, 2026, 12:03 AM

Patient advocates #pwME #pwLC (who are not lawyers) this could be a great opportunity to explore systemic reforms needed for our communities 👇

@stpaulsbay.bsky.socialOct 5, 2026, 11:40 PM

Complexity bias makes people think the fix must be complicated. It isn't. It just requires looking past the cell wall at a cheap, safe generic sitting in every pharmacy. Please share. #rs5522 #NEISVoid #pwME www.beyondbloodtests.org

@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.
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