#spoonies — Public Fediverse posts

Wenn alles klappt, schaffe ich es morgen das erste Mal zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

https://liegenddemo.de/#termine

#GoFundMECFS #spoonies #Flensburg

Hi there,

I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

Her name is Ali and you can read more about her situation on Reddit here:

https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/

Thanks.

#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

3/

Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

3/

Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

3/

Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

3/

Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

3/

Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

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

As much as I rate #ZenInternet as a ISP, talking to them about a slow connection and getting them to understand my health means I can't be unplugging things on my network and also I wouldn't be phoning them if was just a device on the network or something connected over wifi because that would be dumb is frustrating to say the least.
I thought I had a few spoons to play with today but they are all gone now, retreating back to the bedroom, but the engineer is coming out Friday. #spoonies #mecfs

News Release 9-Mar-2026

Telemedicine remains popular, but who uses it varies widely

https://www.eurekalert.org/news-releases/1119321

“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”

#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses #Spoonies

News Release 9-Mar-2026

Telemedicine remains popular, but who uses it varies widely

https://www.eurekalert.org/news-releases/1119321

“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”

#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses #Spoonies

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

“I really can’t recommend systemic sclerosis as a preventative.”

I was explaining how SSc messes with collagen and causes fibrosis inside and she made the link with far too much wonder and glee “that’s why you have no wrinkles!”

#SystemicSclerosis #autoimmunedisease #spoonies #ChronicIllness

3/
From: "The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

#Spoonies #ChronicallyIll #Disabled #Disability
#Chronicillnessblogger #Chronicillnessquotes
@mecfs @longcovid @pots

2/
"assistive devices, adaptive equipment, whatever term you prefer, they’re not evidence of decline. They’re evidence of a body trying, and of a person choosing to keep living on their own terms."

#Spoonies #ChronicallyIll #Disabled #Disability
#Chronicillnessblogger #Chronicillnessquotes
@mecfs @longcovid @pots

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"

From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf

#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders".

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability

1/

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone

https://mecfs.substack.com/p/some-people-feel-validated-by-an

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

1/

🧵
"Somatic symptom disorder: Why your doctor doesn't believe you're really sick: SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis"

https://mecfs.substack.com/p/somatic-symptom-disorder-why-your

I have been impressed by this blogger.

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

1/

The Emotional Toll of Chronic Illness: Naming the Invisible Grief | Grief is the New Normal

https://www.youtube.com/watch?v=pgqi2W9dmLc

From February 2026 Massachusetts ME/CFS & FM Association newsletter

https://massme.monkeypod.io/mailcoach/webview/campaign/05601954-e0f2-44eb-af44-5aca96c2b253

Comment: I haven't watched it myself so far

#chronicillness #chroniclife #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #Fibromyalgia #Fibro #FMS #FM

"I have long Covid. Don’t call my chronic disease a ‘journey’: I would sooner call the experience a bad trip"

Screenshot from February 2026 AMMES newsletter

https://www.statnews.com/2025/11/25/chronic-disease-journey-long-covid/

#chronicillness #LongCovid #hiddenillness #invisibleillness
#Spoonies #Spoonie #ChronicallyIll #MEcfs @mecfs @longcovid

I’m fortunate to hold occasional dinner parties with groups of my healthy friends (my parents do all the work). Accommodations include having my feet up & going for a rest (or two). 21 minutes yesterday: hard to break away from the chat but worth it

#MyalgicEncephalomyelitis #pacing #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #spoonie #spoonies

How can we manage our wellbeing when interacting with others online?

https://www.actionforme.org.uk/resource/behind-the-screen/

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

A topic of interest to some in #chronicillness community who could benefit from home visits

News Release
Primary care home visits for older adults declined after payment policy changes & COVID-19 in Ontario
https://www.eurekalert.org/news-releases/1114111

https://www.annfammed.org/content/24/1/44

#Homebound #Housebound #SevereME #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

"Creativity and chronic illness" (from the Chronic Living Therapy newsletter)
https://chroniclivingtherapy.com/creativity-chronic-illness/

Features:

- Ballet dancer, @anilvanderzee

- Red Tree and ME – international collaborative art project

- Jeremy Jeffs, Photography project

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs #TheRedTreeandME

1/

I saw this 36-page booklet recommended for people with disabilities & chronic illnesses as well as older people but haven't read.

https://www.aarp.org/livable-communities/housing/info-2020/homefit-guide-download.html

Not sure whether it is mainly of use to those in the US or whether it is pretty international?

#Disabled #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disability

1/

“Disability at home”

“This website documents the ingenuity and creativity that caregivers & disabled people, including those with chronic illnesses, use every day to make home accessible.” (repeat)

https://www.disabilityathome.org/

#disability #chronicillness #disabilityaids #disabled #caring #caregiving #spoonie #spoonies

How Invisible Chronic Illness Adds an Extra Burden to Life

https://www.psychologytoday.com/us/blog/turning-straw-into-gold/202511/how-invisible-chronic-illness-adds-an-extra-burden-to-life

She has ME/CFS herself but the article is not specific to any illness

#invisibleillness #chronicillness #ChronicPain #Spoonielife
#hiddenillness #Spoonies #Spoonie #ChronicallyIll #MEcfs
@mecfs @longcovid
#LongCovid #POTS @pots

Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness #hiddenillness #invisibleillness
#ChronicIllnesses #Spoonies #Spoonie #POTS @pots #Fibromyalgia #Fibro #FMS #FM

"Reimagining You: Finding identity, meaning, and purpose when life doesn’t look the way it used to"

https://onelifelivedwell.substack.com/p/reimagining-you

Blog post by a sympathetic and knowledgeable occupational therapist who specialises in ME/CFS and long Covid.

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness #ChronicIllnesses #Spoonies #Spoonie #ChronicallyIll #Fibromyalgia #Fibro #FMS #FM #POTS @pots

(Not ME-specific)

"Cost-of-disability payment a priority for 2026, says social protection minister"

"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"

https://www.irishexaminer.com/news/politics/arid-41767685.html

#Disabled
#Disability
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

I don't suppose anyone knows an #electrician/ #network engineer in the #Perthshire (#crieff) area who does home #ethernet installations, it's the type of thing I used to do myself but since the health ended I think it's best if I get someone in to put a patch panel in the understairs cupboard and #cat6e sockets in each of the bedrooms and the living room. #spoonies #mecfs #fibro

Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"

Recording
https://www.youtube.com/watch?v=BNZ563Uktaw

Slides
https://batemanhornecenter.org/wp-content/uploads/2025/12/Coffee-With-a-Clinician-Pacing-for-Holidays-and-Special-Events.pdf

Transcript
https://batemanhornecenter.org/wp-content/uploads/2025/12/CWC-Dec-10-Transcript-edit.pdf

I haven't watched it but slides seem sensible

#LongCovid @longcovid @mecfs
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Years of scapegoating rhetoric & politicians casting #disabled people as “scroungers” have reinforced prejudices about the blue badge parking scheme & led to “envy & resentment” instead of equal access, according to a 4-year research project

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

#chronicillness #hiddenillness #invisibleillness #Spoonies #Hiddendisability #Hiddendisabilities @mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

#mecfs @mecfs #longcovid @longcovid #pots @pots #chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

2/
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Screenshot from latest Science for ME weekly update

#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots

New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots

Absolutely knackered but I am very proud to say I've made potato buns for burgers tonight. #mecfs #spoonies #mpn #chronicillness