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#mecfs

73 messages30 participants10 messages aujourd’hui
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

New US research:

Identifying commonalities & differences between EHR representations of #PASC & ME/CFS in the RECOVER EHR cohort

nature.com/articles/s43856-025

"These findings suggest symptom management approaches to these illnesses could overlap"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Screenshot of title, author list, abstract & plain language summary
Public
Fatigatio e.V.

Aus dem #Koalitionsvertrag 2025: „Wir fördern Forschung zu Frauengesundheit und postinfektiösen Erkrankungen (Long COVID, ME/CFS und PostVac).“ - Zitat von S. 78 des Koalitionsvertrags zwischen #CDU, CSU & SPD, 21. Legislaturperiode.

Außerdem: „An myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom, Long- und PostCOVID und PostVac erkrankte Menschen brauchen weiter unsere Unterstützung. Wir stärken hierzu Versorgung und Forschung.“ - Zitat von S. 112 des KoaV.

Zitat der Vorsitzenden Dr. Lange-Riechmann des Fatigatio e.V. zu den Passagen aus dem Koalitionsvertrag 2025 zu ME/CFS und ähnlichen Erkrankungen: "Der Koalitionsvertrag eröffnet gute Chancen für Forschung und Versorgung. Dabei wird unser Blick besonders auf das BMG gerichtet sein, inwieweit hier Strukturen für die Versorgung von ME/CFS-Erkrankten geschaffen und unterstützt werden. Vor allem in Hinblick auf die schwersterkrankten Patienten."
#mecfs#longcovid#postvac
Public
Tom Kindlon

From the ME Association

Update: UK ME/CFS Biobank Steering Group
 
The ME Association has invested £850,000 in the UK ME/CFS Biobank since it was established in 2011 & continues to fund its operational costs.
 
Read updates from the latest Cure ME Steering Group meeting on the blog: meassociation.org.uk/gtt9 

#MECFS #pwME @mecfs

The ME Association · Update: UK ME/CFS Biobank Steering Group - The ME AssociationThe ME Association (MEA) has invested £850,000 in the UK […]
Public *
Badass Britt :mastodon_lgbt:

I’m looking for some advice from folks who have gone through university exams and the like.

I have an exam later in the day on Friday, during the time my mind and body usually require rest and I’m worried it will affect my performance. This is related to disability, so it’s not completely fixable or something the school can accommodate.

Any ideas on how I can try to keep my mind and body rested? I’m so tempted to study and review all day before, and I know I shouldn’t.

Help is welcome and appreciated. 🤓
#MECFS #Disability #School

Edit: I had to defer this exam due to a new infection/illness. Thanks to those who reached out to help! Hopefully my rescheduled exam will be earlier in the day.

Public
Irish ME/CFS Association

Informal notes of Tom Kindlon @tomkindlon (an Irish ME/CFS Association trustee) on a Community Law & Mediation webinar, “Housing supports for people with disabilities”, organised by the Irish ME Trust in April 2025

1drv.ms/b/s!AoHfldspRkWU14Fk8P

#chronicillness #Disabled #Disability @chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Community Law & Mediation Access to Social Housing Supports - Law and Rights 3 April 2025 Mary Heavey - Solicitor Image of some law books
Public *
ahimsa

#MillionsMissing 2025: Sending Out An SOS

Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!

meaction.net/2025/04/08/why-we

Here's how to sign up

Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern

us06web.zoom.us/meeting/regist

Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern

us06web.zoom.us/meeting/regist

@mecfs

#MEAction Network · Why We’re Sending out an SOS this #MillionsMissingOn May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.  HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to … Why We’re Sending out an SOS this #MillionsMissing Read More »
#MEcfs#PwME#MEAwareness
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