#chronicillnesses — Public Fediverse posts

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

"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

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

"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

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/

(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

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

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

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

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

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

https://pubmed.ncbi.nlm.nih.gov/40330647/

Screenshot from November AMMES newsletter

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

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

#mecfs #longcovid #pots @mecfs @longcovid @pots #chronicillness
#chroniclife #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses
#Spoonies #Spoonie #ChronicallyIll

I saw this posted to a private FB group but I'm not sure who the creator was?

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

Find New Meaning
https://cfsselfhelp.org/library/10-find-new-meaning

"In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us"

A little bit of what might be called psychobabble near the start but interesting topic

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

(US)
"Medicaid Work Requirements Will Devastate People With Invisible Disabilities — ME/CFS & #longCOVID patients must qualify as 'medically frail'" (October 7 2025) by Laurie Jones

https://www.medpagetoday.com/opinion/second-opinions/117839

3 min read

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #POTS @pots #postcovid19 #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

🌟 Introduction Post 🌟

Hi everyone! 👋 I'm Lanie Molinar Carmelo (she/her), and I'm thrilled to join the amazing community here on allovertheplace.ca! Here's a little about me:

🧑‍💻 Who I Am

• Conservative #Christian woman and #Aroace
  
• Totally #blind and #ActuallyAutistic, living with multiple #chronicIllnesses
  
• Advocate for #DisabilityRights, passionate about creating a more inclusive world 🌍
  

I'm a #UsabilityTester and an aspiring #AccessibilityConsultant, working to make technology better for everyone, especially those of us with disabilities. I'm most passionate about helping those with multiple disabilities, as it's an area that doesn't get enough attention.

🐾 Meet Squeaker!

I'm also the proud human to my 10-year-old Miniature Pinscher, Squeaker, who is the best little companion anyone could ask for. 🐕💖 He drives me nuts sometimes, but I don't know what I'd do without him. My profile picture features me with Squeaker, and my header shows him wrapped in a blanket with just his adorable face peeking out!

📚 What I’m Studying

I'm currently learning:

• Digital Accessibility through the BIT Accessibility Analyst Course
• Literary Braille Proofreading via the NLS
• Programming on platforms like freeCodeCamp and Codecademy
  

My goal is to develop accessible apps that empower people with disabilities, contribute to open-source projects that promote inclusion, and just do what I can to make the world more accessible.

💡 What I Do

I run or co-lead several online support groups for people with multiple disabilities. These groups provide safe spaces to connect, share resources, and talk with others who "get it." You can find them here:

• Facebook: Multiple Disabilities Peer to Peer Support Group
  
• Discord/Mailing List: MultAbilities
  
• Clubhouse: People with Multiple Disabilities
  

Right now, my focus is on growing these groups and making connections with others who are passionate about supporting multiply disabled individuals. If you're interested in joining or collaborating, feel free to reach out or check out my website at laniecarmelo.tech, where you'll find links to all the groups!

🎮📖🍴 My Interests

When I’m not advocating or studying, you can find me:

• Exploring #technology and experimenting with self-hosting on my Raspberry Pi 🖥️
  
• Reading #SciFi, #Fantasy, #Mystery, and some nonfiction 📚
  
• Playing #AccessibleGaming titles like incremental games, puzzles, RPGs, roguelikes, and MUDs 🎮
  
• Enjoying delicious food—especially #chocolate, #seafood, #milk, and #cheese 🍫🧀
  

I also love swimming 🏊‍♀️ when my health allows it.

🛠️ My Goals

One day, I hope to found a nonprofit organization to support multiply disabled individuals. The nonprofit would:

• Provide peer support groups
• Help fund assistive technology
• Advocate for education and employment opportunities
• Collaborate with disability-focused organizations to improve accessibility

For now, I'm focused on running my support groups and building connections that could help make this dream a reality. If you have ideas or resources—or just want to chat—let me know! 🤝

🤝 Let’s Connect!

I’m always happy to chat about:

• Accessibility in #tech or tech in general
  
• Disability advocacy
  
• Programming (#HTML, #JavaScript)
  
• Braille
  
• Books
  
• Or just life in general!
  

Feel free to follow me here or check out my website at laniecarmelo.tech.

#Introduction #DisabilityCommunity #AccessibilityMatters #Blindness #AutismAcceptance #ChronicIllnessWarrior #TechForGood #DisabilityAdvocate #OpenSourceProjects #BrailleLiteracy #GamingWithDisabilities #InclusiveDesign