Lmst

I'll contribute a serious, and a fun heat wave tip:

🧠 As my body doesn't regulate temperature very well, I often feel gross (unwell) without ever registering I am hot. So staying on top of hydration and staying cool, rather than having to cool off once already in crisis, becomes a crucial self care job.

⛲ I have hosted meals where I filled up a kiddie pool, put the patio table in the middle, and had everyone sit around with their feet in the pool. Fekkin lovely.

#spoonies #heatWaveTips

Just found out that there is a slightly raised tax-free threshold that I should have been applying for in the tax return when you have been graded as 20%+ disabled.

Next year, I need to find where that is in the tax forms. I do not have the spoons to try to argue for the past 10 years. The disability office really should have told me about this though.

#GermanTax #spoonies #disability

Doctors as patients - M.E./Lyme/Long Covid, but I would guess it would be similar with any chronic illness.

It's scary to hear how one group of psychs is actively gatekeeping against research on M.E. and related illnesses.

#LongCovid #ChronicIllness #spoonies #CFS #Lyme

https://www.youtube.com/watch?v=J0ywwLIfH_w

Recap of “Support Group: Re-introducing Peace, Happiness and Joy to the Illness”, a professionally-facilitated support group organised by the Bateman Horne Center

https://batemanhornecenter.org/wp-content/uploads/2025/06/20250415-Support-Group-Recap.pdf

#chronicillness #spoonie #mecfs #longcovid #pwme #cfs @chronicillness @spoonies @mecfs @longcovid #spoonies

7/
“Come the next Olympics, we will celebrate the medalists for their extraordinary performances. But let’s also create space to honour something much less visible, yet no less demanding, disciplined, or full of sacrifice: the work of rest for those with #chronicillness”

#spoonie #mecfs #longcovid #spoonie #spoonies
@mecfs @longcovid @chronicillness @spoonies

Recap for Bateman Horne Center’s professionally-facilitated support group, “Getting Unstuck in Stuck Places”

https://batemanhornecenter.org/wp-content/uploads/2025/06/20250408-Support-Group-Recap.pdf

#mecfs #chronicillness #spoonie #longcovid #pots #fibromyalgia #pwme #cfs @mecfs @chronicillness @spoonies @fibromyalgia @pots #spoonies

Some low-energy products for washing one's hair

From: May 2025 Caregiver Call Summary

Links:
https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product

https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap&

https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product

https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1

Hashtags:
@chronicillness
@spoonies
@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Washing one’s hair if one has energy and arm limitations can be very difficult. A call participant mentioned Shampoo Caps that one places over the hair, rubs in, removes the cap and hair is cleaned – no rinsing needed. Some of these are available with fragrance free shampoo

(They said they tried both of these. The Medline was what the hospital provided for their partner.)

https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product

https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap&

They also told us there are wash gloves with similar shampoo – though they haven't tried this.

https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product

https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1

"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.

3/

This scheme could in theory be useful for some people with #MEcfs who for example need to take rest which lowers their productivity per hour and other things that might lower their productivity. We’re not sure if many people with ME in Ireland actually avail of it.

#PwME #spoonie #spoonies #CFS
@disability @spoonies @chronicillness @mecfs

🧵
(Not ME-specific)
Taoiseach launches expansion of Wage Subsidy Scheme

https://www.breakingnews.ie/ireland/taoiseach-launches-expansion-of-wage-subsidy-scheme-1769938.html

#disability #chronicillness @disability @spoonies #spoonies #spoonie @chronicillness @mecfs #mecfs

1/

7.7: Ariel & Christina Discuss Living with a Disability as a Solarpunk

Today Christina talks to Ariel about what it's been like to live as a solarpunk with a visible - and then invisible - disability. Science fiction has spent decades dreaming of how future tech will make disabled people able to function as if they were fully abled. Now solarpunk has arrived on the scene to ask why should disabled bodies have to always be the ones to adapt? It can be uncomfortable, intrusive - not to mention expensive. Solarpunk wonders why can't cities, society, workplaces, and the like be the ones to use the tech to make themselves more accessible to and inclusive of disabled people?

Tune in as Ariel and Christina discuss the portrayal of disability in science fiction and solarpunk and how having to suddenly live with a disability opens your eyes to many of the ways cities fail people with disabilities.

https://youtu.be/nITURrKfwvI

#solarpunk #SolarpunkPresentsPodcast #Episode #SeasonSeven #disability #spoony #SpoonTheory #spoonies #ChronicPain #ChronicFatigue #SolarpunkAndDisability #Ableism #InvisibleDisability #ScienceFiction #SciFiAndDisability

4/
“The researchers identified four broad categories of harm that clinicians’ symptom invalidation can lead to:…”

#DoctorPatientRelationship #Gaslighting #chronicillness #invisibleillness #mecfs #lupus #eds #fibromyalgia #ibs #longcovid #spoonies
@lupus @eds @fibromyalgia @ibs @mecfs @longcovid @chronicillness @spoonies

The researchers identified four broad categories of harm that clinicians’ symptom invalidation can lead to: Poor emotional states, such as self-doubt, feeling neglected or isolated, negative self-esteem, depression, feelings of hopelessness, suicidality, and negative moral emotions like shame, guilt, humiliation, and foolishness; Negative healthcare emotional states and beliefs, such as healthcare-related anxiety, trauma, loss of trust in clinicians, frustration, anger, and “burnout” in seeking healthcare; Induced healthcare behavior, such as avoiding seeking care and underreporting or downplaying their symptoms; and Diagnostic delay, which averaged 6.7 years in the studies the researchers reviewed.

🧵
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

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

🧵
From Blanchardstown Centre for Independent Living on X

🎙 On #DisabilityMatters, Mary Tynan shares how ME & access barriers shape her life — and art, talks about her new film Nadirshah.
📻 Thurs 4PM | 5 Jun on @925PhoenixFM

More:
https://bcil.ie/archives/8344

#Disability #PwME #MEcfs #CFS @disability @mecfs #myalgicencephalomyelitis @chronicillness #chronicillness @spoonies #spoonie #spoonies

1/

From ME Research UK:

Symptom invalidation (also known as medical gaslighting) may lead to diagnostic delays for people with complex chronic illnesses like #MECFS finds a study published in the journal "American Psychological Association". Read more: https://bit.ly/451riym

#chronicillness #invisibleillness @chronicillness @spoonies #spoonies #spoonie @mecfs @fibromyalgia #fibromyalgia #fibro #longcovid @longcovid #hiddenillness @pots #pots

`Symptom invalidation' by health professionals may lead to delays in diagnosis. Symptom invalidation - medical gaslighting -occurs when a medical professional invalidates a patients symptoms or experiences. Research has shown for people with complex chronic illnesses like ME/CFS this may lead to: Self- Shame and doubt guilt Negative self-esteem Depression Loss of Healthcare trust burn out Feeling let down ) Healthcare related anxiety or trauma Under-reporting of Avoidance of symptoms healthcare Diagnostic delays Bontempo et. al., American Psychological Association (2025) RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942

The exact cost varies between individuals.

And indeed it can vary within the same person.

And some people tragically can’t do some of these at all.

[I myself haven’t gone for a walk in over 30 years though can get out now on my mobility scooter and electric wheelchair].

#chronicillness @chronicillness @spoonies #spoonies #spoonie #mecfs @mecfs #LongCovid @longcovid #fibromyalgia @fibromyalgia

#Spoonies

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