Lmst

"The doctors are not OK"
https://mecfs.substack.com/p/the-doctors-are-not-ok

Blogpost arguing that doctors may not be willing to admit in a consultation they don't understand a patient's condition/symptoms/etc & instead not treat them well (e.g. gaslighting them) because of the way they themselves were trained

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

The doctors are not OK.
Shame, medical training, gaslighting, and cycles of abuse.
K. Johnstone
Jun 03, 2025
A few days ago I listened to a wonderful podcast, Long Covid MD podcast #50: Ask The Patient - Why Medicine Still Doesn't Listen, with Dr Zed Zha. In it, Dr Zha told a story about her time as a medical student working in a hospital. A senior doctor asked a question and the student replied honestly: "I don't know". The senior doctor responded by humiliating the student, and later wrote in the student’s assessment that she was not fit to work in that particular area of medicine.

Dr Zha recalled feeling intensely ashamed in that moment. The feelings of being shamed were deeply upsetting, even traumatic, and it seems that this experience of being shamed was a common one in medical training. It was even noted that medical training is based on shame.

A protest guide from #MEAction for folks with ME/CFS, Long Covid, and other chronic illnesses that cause limited energy:

https://www.meactions.org/_files/ugd/b5886a_67f8935af3594508b1a7bcd86e6b7c58.pdf

"We hope this guide can help activism become more intersectional and enable those attending events to do so as safely as possible."

@mecfs @longcovid

#USPol #MEcfs #LongCovid #POTS #Fibromyalgia #NEISvoid #ChronicIllness #Disability #Resist #Protest #WearAMask

Why?

All people deserve to have a voice and speak out for what they believe in or ways they want to seek change. Not everyone has equal opportunities to do that. Often some of our most important voices get left out of the collective. We need to ensure all people and their voices, no matter how they need to be expressed, are included.

This week’s game is apparently “how many of my chronic issues can flare up simultaneously?”
0/10, lots of notes.
#NEISvoid #ChronicIllness #ChronicPain

I'm usually chill rocking my cripple punk lifestyle but today was a day where I gave in to the "Only knives left" attitude and would have shived the dr that was sure I was exaggerating celiacs, and Endo and chronic fatigue and fibro, and unexplained muscle loss in my leg. Trying not to get into the "if that mofo had believed me maybe I wouldn't be in so much pain" rabbit hole of seething anger. #neisvoid #disabled #nospoons

8/
“Sloan’s study similarly found higher rates of healthcare avoidance and of underreporting symptoms “from distrust and fear that symptoms would be disbelieved and misattributed again,” the researchers wrote.”

#neisvoid #longtermdisease #longtermillness

@lupus @eds @fibromyalgia @ibs @mecfs @longcovid @chronicillness @spoonies

a reminder there is a feed for “No End In Sight Void” or #NEISVoid — living with chronic illness here: bsky.app/profile/did:...

RE: https://bsky.app/profile/did:plc:7jjqhixxhj2vinaxr26i4gkc/feed/aaajewory7l4i

🧵
Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

Medscape Medical News > Features
‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
Tara Haelle
June 03, 2025

Regards #Fibro #Fibromialgia, does anyone get any relief with muscle relaxants of any kind? #Spoonie #NEISVoid

I haven't read the book but the blog post is interesting enough itself

https://meglobalchronicle.wordpress.com/2023/12/23/the-words-that-saved-me/

"It is about my experiences and the emotional journey of finding hope and courage whilst living with severe chronic illness."

Hashtags:
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

Cover for poetry book with this text:

THE WORDS THAT SAVED ME
A POETRY COLLECTION
SARAH MOZER

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

https://www.eurekalert.org/news-releases/1074887

Image is a screenshot from June 2025 AMMES e-newsletter

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

A photo of somebody in nature with their head down
with this text:

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds

News release 04 June 2025:

"Groundbreaking discovery of 'new' pain target brings hope for those with chronic pain"
https://www.abdn.ac.uk/news/24440/

Link to associated research paper:
https://www.science.org/doi/10.1126/sciadv.abc5219

#pain #ChronicPain @chronicpain @chronicillness #neisvoid
#chronicillness
#chroniclife

Groundbreaking discovery of 'new' pain target brings hope for those with chronic pain
04 June 2025
2025-06-04
University of Aberdeen
University of Aberdeen
The University of Aberdeen
PlayImage 1 of 3
In a groundbreaking discovery, chronic pain has been shown to be physiologically different from acute pain and now scientists have the roadmap for how to target it.

Researchers from the University of Aberdeen, Academia Sinica in Taiwan and a group of international experts say the discovery brings hope for sufferers of chronic pain and fibromyalgia.

The team identified that in the nervous system chronic pain is processed differently from the pain that comes from an injury or over exertion.

Crucially, they found a new and distinct separate physiological pathway for this chronic type of pain, which means it can now be a target for future therapies.

Dr Guy Bewick, Senior Lecturer in Neurosciences at the University of Aberdeen, explains: “We all know there are different types of pain. There is the sharp stinging pain of pricking your finger with a needle, and there is also the chronic pain of muscle soreness after unaccustomed exercise. Nevertheless, most of us in the West, including scientists, regard both simply as 'pain'. Currently, Western medicine is very often ineffective for chronic pain.

#ChronicPain life be like: when do I take this pain med so that I can help with pride set up but also enjoy being AT pride?
#NEISVoid

"One Red Leaf at a Time: an international art project"

https://theredtreeandme.substack.com/p/one-red-leaf-at-a-time-an-international

"The Red Leaf Creative Collaborative is excited to launch One Red Leaf at a Time: an international art project."

To contribute a creative expression on the theme of ‘One Red Leaf at a Time’ please register your interest at this link:
https://bit.ly/OneRedLeafArt

If you don't have a google account then send email to jo@theredtreeandme.com

@mecfs

#MEcfs #PwME #POTS #LongCovid #NEISVoid #ChronicIllness #Spoonie #Art

Artist Callout
Calling all chronically ill artists and allies ...
One Red Leaf at a Time: an international art project.

If you, or anyone you know, would like to submit a piece, please fill in the google form below or email jo@theredtreeandme.com and we will send you the details.
bit.ly/OneRedLeafArt

All art mediums welcome!

I ran a round of my poetry TTRPG with Sheik and this was my result.

Here’s the RPG!

-Allēna

#cptsd #NEISvoid #poetry #poetryTTRPG #poetsofmastodon #Processing #queerart #queerpoet #queerwriter #Sheik #spilledink #spilledwords #transmasc #transpoet

This one is called “resurrection.” -Allēna

***

#writingcommunity #amwriting #amwritingpoetry #punk #cripplepunk #disabilities #survivor #cptsd #spilledink #spilledwords #trans #poetsofmastodon #gay #queer #queerwriter #rebirth #healing #rest #NEISvoid

#amWriting #amwritingpoetry #cptsd #CripplePunk #disabilities #gay #healing #NEISvoid #poetsofmastodon #Punk #queer #queerwriter #rebirth #rest #spilledink #spilledwords #survivor #trans #writingcommunity

I'm not sure I'm ever going to be a fan of losing my independence like this.

Having to be pushed everywhere means that I am totally under the control or whoever is pushing my chair.

In this instance, it means my very well-meaning mother not paying attention as she pushes me into potholes, bushes, etc. She's so ADHD. She gets distracted and just does not notice these things.

#NEISvoid #Spoonie #MECFS #Fibromyalgia

#neisvoid

Client Info