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#chroniclife

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Public
Tom Kindlon

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
cards2warriors.org/
cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

#chronicillness @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Chronic Illness Support Have you heard of Cards2Warriors? We want to highlight the special work this nonprofit does for those affected by rare or long-term illnesses —including patients, caregivers, siblings, and medical professionals. Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those who need encouragement and cheer. It doesn't matter which of the 7,000+ rare or long-term illnesses you've been diagnosed with —Cards2Warriors welcomes YOU and wants to shower you with some snail mail support! Open to warriors worldwide, with an option for digital cards. Learn more and sign-up here.
Public
Tom Kindlon

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

eurekalert.org/news-releases/1

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
Continued thread
Public
Tom Kindlon

5/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

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

@mecfs @longcovid @chronicillness @spoonies

Table 1. Cont. Never-Words Explanation and Impact Alternative “Don’t confuse your Google search with my medical degree”. This statement has become popular among healthcare professionals, given various online information platforms and social media groups that patients use to obtain medical information. However, we find that many patients with complex chronic illnesses had to become educated in their disorder out of necessity, given limited help from medical professionals. “I am glad you’re reading about your illness and educating yourself on possible tests and treatments. Thank you for bringing this information to me. I will look through it and let you know my thoughts”.
Continued thread
Public
Tom Kindlon

2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

#LongCovid #MEcfs @mecfs @longcovid @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will work on this together”. “At least it’s not cancer”. Minimizing symptoms and disabilities is not well-received by patients who are suffering with non-terminal, but debilitating, and disabling conditions. Comparing diseases to make a patient feel better is a strategy that is best avoided, since it usually has the opposite impact.
Public
Tom Kindlon

Thousands of Swedes are on sick leave without receiving compensation from the Social Insurance Agency. Kristina Bergman is forced to live on social assistance. "Every month I have to stand with my hat in hand," she says.

Google English translation:
arbetet-se.translate.goog/2025

Image from latest Science for ME update

#MEcfs #CFS @mecfs @chronicillness
@spoonies
@disability
@disabilityjustice
#chronicillness
#chroniclife

Sweden The union magazine Arbetet writes that thousands of people are on sick leave with no sickness compensation, and have to make do with the lowest social assistance which must be applied for each month. This is particularly difficult for people with chronic illnesses. Kristina Bergman who suffers from ME asks when the rules will change for people in her situation and when they will be believed in that they can't get back to work.
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