#SevereME
3/
Associated news article which includes a link to a separate but related 8.5-minute TVNZ Breakfast piece with Glenys Rumsey & ANZMES President,
Fiona Charlton
https://www.1news.co.nz/2025/05/12/mysterious-fatigue-illness-traps-people-in-their-bodies/
Just changed profile: now 31 years housebound with #severeME (more than half my life) (ill 36.5 years)
Hope research progress is made soon
Links:
- A list of research funds: http://phoenixrising.me/resources-2/research-charities
Care instructions for how to take care of people with severe ME.
Google translation:
https://drive.google.com/file/d/1phdngalXgINYG-4eiySeyE1VumaZg7aN/view
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
The Sunday Times As my daughter died of ME, the state met in secret to blame me
Screenshot from latest Science for ME weekly update
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
3/
World ME Alliance published a new guide titled "Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians"
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/
Screenshot from latest Science for ME weekly update
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy, and research for the week of Aug 4 - 10.
Don't miss the news about the #DecodeME initial DNA results!
There's also news about #SevereME Day, Aug 8.
https://www.s4me.info/threads/news-in-brief-august-2025.45582/#post-632266
Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
From #MEAction
Severe ME Artists Project, 2025:
https://www.meartistsproject.com/severe-me-artists-project-2025
Over 100 art pieces were submitted by severe ME patients. The website includes a video compilation of the artwork.
August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013.
Severe ME, medical abuse, neglect
Also released today for #SevereMEAwarenessDay , Kara Jane's posthumous album "In Limbo". Here's an article written by her friend:
Severe ME Day – 8th August – is dedicated to raising awareness about severe ME and remembering those who have lost their lives to this disease. Estimates suggest that around 25% of individuals with ME suffer from the severe form.
Read more: https://bit.ly/SevereMEday25
Pretending to be a 
[continued from above]
Help me, help us. Some of us need money. Check in on your ill friends. Maybe you can lend us a hand so we have food and water.
Save yourself and wear a mask. Rest if you get ill. Rest.
I am so tired. So tired.
https://aldercone.itch.io/help-me-zine-for-world-me-day-2023 (cwing very sad)
https://aldercone.itch.io/caring-for-evel-zine (cwing being silly about serious things)
[continued from above]
I can still think a little.
Thinking or making decisions or reacting is hard, and slow, and frustrating.
Always struggling.
Struggling to be heard by doctors, struggling with white supremacy, struggling to keep a roof over my children's heads, struggling to access life.
[continued in reply]
Today is Severe ME Day
I'm exhausted like I am every day no matter how much I sleep.
Sleeping won't refresh me and doesn't leave me feeling ok, yet the insomnia hurts even worse than recovering from sleeping.
I'm in pain like I am every day.
Pain is the one thing my body remembers how to do really well.
[continued in reply - 
]
2/
New Clinician Resource Guide Published for Severe ME Day 2025
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/
#SevereMEDay #SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
2-page factsheet from the World ME Alliance:
New Clinician Resource Guide Published for Severe ME Day 2025, "Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians"
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
From the 25% ME group:
"This year we decided to focus on carers for our severe ME Awareness week"
https://25megroup.org/campaigning/severe-me-day-2025/
The financial information that makes up most of this page is on the UK system.
#SevereMEDay #SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #carers
A bittersweet story.
"Second album released after death of singer with ME"
Of course tragic that she passed away but great she is raising awareness & much needed money for ME post-mortem research from the grave, along with the help of others
https://www.bbc.com/news/articles/c5yl92k9dzxo
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME