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@stpaulsbay.bsky.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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.social Oct 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

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.social Oct 5, 2026, 6:38 PM

There’s a typo in one of my comments:

“I shared biological studies on ME/CFS because biomedical knowledge is constantly evolving in general and the hope is that the more eyes there are on it, *the* more that people can put the pieces of the puzzle together to find solutions.”
#mecfs #pwme #cfs

@tomkindlon.bsky.social Oct 5, 2026, 5:31 PM

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper

"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

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

#MEcfs #PwME #epatient #epatients #CFS

Abstract
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.

@tomkindlon.bsky.social Oct 5, 2026, 4:28 PM

From @meresearchuk.bsky.social

Self-management support for people with ME/CFS should be personalised, delivered in manageable stages, and embedded in a consistent care pathway with ongoing review and follow up finds study from Norway.

Read more: tinyurl.com/ycyrv5ms

#mecfs #cfs #pwme

`Self-management support' often fails to reflect the physical and cognitive nature of the ME/CFS
r Researchers in Norway interviewed 12 people with -1 ME/CFS and 4 next of kin about their experiences of self management support for ME/CFS.
r Results indicated that participants felt that current support offered by the health care system often failed Lo reflect the physical and cognitive effects of ME/CF_S
rParticipant experiences were grouped into three key themes, which reflected that the following should be included in care:

Tailored, accesible Consistent care Peer, practical and L support and validation family support.
] r Note: Participants with ME/CFS in this study were all women, limiting the transferability of the results.
RESEARCH UK
INFORM. INFLUENCE. INVEST.
SC 036942
Gronning, K., Lysfjord, L.E. & Rostad, A.K.H. BMC Health Sery Res. 2026;26 (1182): 14962-9

@mediaactivist.com Oct 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

@tomkindlon.bsky.social Oct 5, 2026, 1:53 PM

"Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS."

#MEcfs #CFS #PwME

@swastrosarah.bsky.social Oct 5, 2026, 11:04 AM

www.youtube.com/watch?v=fL4p...
#pwME #LongCovidME highly recommend you save this presentation to your records. It is one of the most succinct descriptions of the disease process, packed with current international data, and full of promise based on almost 20 years of clinical experience.
🙏 Ron Davis

@chembarathi.northsky.social Oct 5, 2026, 10:24 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

@achronicvoice.com Oct 5, 2026, 8:30 AM

"But a doctor is a #doctor & their word still holds weight..despite the fact that the second we got home, my mum wrote a strongly worded complaint to the #NHS about the doctor’s attitude, we decided that maybe I should try out the Couch to 5K.": buff.ly/miT6kEP

by chronicallyillkat
#pwME #MECFS

@michaelnobbs.bsky.social Oct 5, 2026, 7:54 AM

I had quite an audience as I filmed my #MorningView 😀

It's lovely to see the sheep back in numbers 🐑 🐑 🐑 🐑 🐑 🐑

Wishing you a gentle start to the week.

#MECFS #pwME #Wales #CreativeHabit

@achronicvoice.com Oct 5, 2026, 4:30 AM

" #MECFS has taken enough pieces of my old life; [my #optimistic self] was one piece I refused to give up. In fact, I think that I needed to continue to be that person now more than ever.": buff.ly/1a3Rrxu

by lisaalioto
#SelfIdentity #MondayBlogs #ChronicIllness #disability #pwME #ChronicFatigue

How to Use the Tetris Effect to Invite Positivity Back into Your Life, Despite Chronic Illness