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@melmecfs.bsky.socialOct 9, 2026, 3:12 PM

#MECFS #LongCovid #PostCovid #PostVac #severeME #verysevereME

Bitte RT, danke.

@anilvanderzee.bsky.socialOct 8, 2026, 8:27 PM

Sometimes it can feel like things are standing still. Especially for severe ME patients who can't easily participate in research. But in the Netherlands, they are being included.

archive.today/8DqOm

#pwME #longcovid #QVS #lyme #PAIS #severeME

@meassociation.org.ukOct 7, 2026, 3:31 PM

Get in touch today:
0808 801 0484
meconnect@meassociation.org.uk 

#pwME #LongCovid #SevereME

@tomkindlon.bsky.socialOct 6, 2026, 12:27 AM

From Norway

The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS

The importance of work: A qualitative study of primary carers of severe ME patients’ experiences of balancing work with comprehensive caregiving responsibilities — Størdal and Iversen "This article explores how primary caregivers of people with severe ME experience combining work with their extensive caregiving responsibilities." Article | Thread
@nlizaki.bsky.socialOct 5, 2026, 6:15 PM

This must stop. I'm tired of losing my friends in the ME community to death. I've been tirelessly advocating since 2011, and we've only received crumbs in terms of funding! We don't have decades. We are alive NOW. (2/4)

#SevereME #MildME #MyalgicEncephalomyelitis #MECFS

@nlizaki.bsky.socialOct 3, 2026, 9:43 PM

Correction! If you want to join Team Nevra and help make graphics, videos, do admin, & more, please message @ myspiritflora on Instagram & one of the team will get back to you asap.

gofundme.com/f/save-nevra
PayPal.me/SaveLizNevra

#pwME #MECFS #severeME #verysevereME

@nlizaki.bsky.socialOct 1, 2026, 6:50 AM

In Pakistan, landlords do not like to rent to unmarried women, much less disabled women. Your support helps Nevra overcome barriers and meet basic needs for housing, food, and medical care.

gofundme.com/f/save-nevra
paypal.me/SaveLizNevra

#SaveLizNevra #MECFS #SevereME #MillionsMissing #pwME

@malnutritionme.bsky.socialSep 30, 2026, 8:08 AM

Many people with severe and very #severeME do not receive enough care time to meet their basic daily needs of eating, drinking, washing, and toileting.
People with #ME need recovery time between these activities and care visits do not allow for this.

@alex-wears-crocs.bsky.socialSep 28, 2026, 11:22 AM

I still have so much life left to live, if only I could live it. #millionsmissing #severeME

@halcionandon.bsky.socialSep 28, 2026, 8:30 AM

I forgot that throwing up gives you PEM when severely Ill with #SevereME.

Pro tip.

*woooosy*

#ChronicIllness

@marjojo2004.bsky.socialSep 28, 2026, 7:43 AM

I am delighted that two texts of mine have been published by @wordgathering.bsky.social - A Journal of Disability Poetry and Literature.

THE GIFT is slightly older. LA PARISIENNE ET LE RENARD, OR: ON LONGING is new.

wordgathering.syr.edu/vol20/issue1...

#ME/CFS #severeME #FlashMemoir

@nlizaki.bsky.socialSep 28, 2026, 7:00 AM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

Links:

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

@tomkindlon.bsky.socialSep 28, 2026, 12:55 AM

The Severe & Very Severe ME Research Registry has been created. It gives people with severe and very severe ME from Germany, Austria, & Switzerland the opportunity to participate in research through home visits

severe-me-registry.de

#SevereME #MEcfs #CFS #PwME #VerySevereME #ChronicFatigueSyndrome

@mefoggydog.bsky.socialSep 27, 2026, 3:35 PM

31 days to go until #BedForSevereME!

Check out the annual awareness and fundraiser event on our website.

mefoggydog.org

#pwME #MEcfs #SevereME

@alishawhittam.bsky.socialSep 27, 2026, 9:54 AM

Going to the doctor when you live with ME/CFS can feel overwhelming.

These are a few questions you might want to take with you. 💙

💙 Find more information about living with ME/CFS at alishawhittam.com

#MECFS #MyalgicEncephalomyelitis #SevereME #MEAwareness #ChronicIllness #Disability #CarerSupport

@nlizaki.bsky.socialSep 26, 2026, 5:14 PM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

Nevra is currently in the worst ME/CFS crash she has experienced. Her neurological and sensory symptoms have deteriorated severely, alongside major MCAS reactions, CCI symptoms and pain. She now spends almost all of her time in darkness and often needs sunglasses even inside her room.Nevra finally secured an apartment that is mould- free with the help of her brother as the tenant. The landlords don't rent to single females as the society she lives in in Pakistan is rife with gender discrimination.Nevra urgently needs aggressive rest. Instead, she has been forced to use the little energy she has on: * securing housing * landlord negotiations * organising carers * interviewing PAs * contracts and paperwork with and without lawyers, graphic designing * setting up a functioning, accessible home * trying to access medical care She physically cannot keep doing all of this herself.Things have deteriorated further. First, Nevra went 36 hours without any food, water, or medication, and then weeks later, she had to be rushed to the hospital after developing dangerous medication-withdrawal symptoms. She is currently experiencing seizures, and doctors are trying to stabilise her.
@tallontire.bsky.socialSep 24, 2026, 11:03 AM

An excellent article, tallies very well with my experience with #severeME. Thankyou @georgemonbiot.bsky.social, please keep writing about us.
www.theguardian.com/commentisfre...

@anilvanderzee.bsky.socialSep 24, 2026, 10:59 AM

Great rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI

@tomkindlon.bsky.socialSep 24, 2026, 12:20 AM

The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME & conflicts with the authorities.

Google translation:
sundhedspolitisktidsskrift-dk.translate.goog/nyheder/helb...

Screenshot from Science for ME update

#MEcfs #PwME #CFS #SevereME

Denmark The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME and conflicts with the authorities. It includes an interview with one of the actors, Hjalte Ilsøe Gustavusson who has a family member with ME. He says: .."the film depicts a situation where the authorities follow a procedure blindly and put human responsibility on the shelf". The film is written and directed by Oscar winner Martin Strange-Hansen. Article (Danish) l Thread
@tomkindlon.bsky.socialSep 23, 2026, 6:18 PM

Ror Preston:

Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

New @wecrunchme visual on this topic 💙

#SevereME #MEcfs #PwME

1/

Health-related quality of life declines sharply at higher levels of ME/CFS disability Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity Mean health-related quality of life (EQ-5D-5L) 1.00 0.80 0.60 0.40 0.20 0.89 ME/CFS disability severity → 0.69 95% confidence interval O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death 0.44 0.02 0.00 General Population Benchmark Mild (n=40) Moderate (n=137) Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument' Severe Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'. (n=19) M CrunchME CC BY 4.0
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