#severeme — Public Fediverse posts

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller

https://virology.ws/2026/09/06/trial-by-error-newly-knighted-anil-van-der-zee-discusses-his-royal-honor/

#MEcfs #PwME #severeme @mecfs

ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS

https://meassociation.org.uk/wp-content/uploads/2026/09/BACME-MECFS-Tube-Feeding-Survey-Report-Sept-2026.pdf

https://s4me.info/threads/uk-bacme-tube-feeding-survey-2025-closes-30th-september-2025.45619/post-718718

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS @mecfs

6/

“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs

4/

Bateman Horne Center on
“Listen. Believe. Do No Harm.”

#SevereME #PwME #CFS #MEcfs
@mecfs

3/
“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.”

#SevereME #MEcfs #PwME #CFS #SevereCFS

@mecfs

I thought this was very good (as usual from Amy Mooney). Notice the audio version.

"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"

https://batemanhornecenter.org/listen_believe_do_no_harm/

#SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

“Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction” By David Tuller

https://virology.ws/2026/09/02/trial-by-error-patient-advocate-anil-van-der-zee-receives-dutch-royal-distinction/

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME @mecfs

“Accelerating Severe ME/CFS Research”
(August 6, 2026) by the Solve ME/CFS Initiative

https://solvecfs.org/accelerating-severe-me-cfs-research/

#MEcfs #SevereME @mecfs

When My Myalgic Encephalomyelitis Was Severe
Lisa Marie, a member of the WIMEL Writers group, shares an excerpt from her essay "When My Myalgic Encephalomyelitis Was Severe."

https://www.youtube.com/watch?v=sj8FuSFMchg

https://wimel2.wordpress.com/

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #CFS @mecfs

"Severe-Very Severe Myalgic Encephalomyelitis: What GPs need to Know" 60-second Guide

whānau means extended family

https://anzmes.org.nz/world-me-day/severe-me-day/severe-me-day-2026/

#MyalgicEncephalomyelitis #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs
#SevereME

I have just changed my profile: now 32 years with #severeME (more than half my life) (ill 37.5 years)☹️

Hope research progress is made soon🙏

Links:

Lists of research funds:
https://europeanmecoalition.com/resources-for-researchers/
&
https://me-pedia.org/wiki/Category:Research_initiatives

- My story: https://www.independent.ie/lifestyle/health-wellbeing/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/a/150853043.html
Non-paywalled version of my story:
https://archive.is/IXpod

#MyalgicEncephalomyelitis #MEcfs #PwME #CFS @mecfs

Wales Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care

https://petitions.senedd.wales/petitions/247069

https://s4me.info/threads/united-kingdom-news-including-uk-wide-england-ni-and-wales-see-separate-thread-for-news-from-scotland.29404/post-712702

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #SevereMECFS #VerySevereME @mecfs

Science for ME @s4me Fact Sheet 4: Management of severe and very severe ME/CFS

https://s4me.info/docs/Management%20of%20severe%20and%20very%20severe%20MECFS.pdf

https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/

Screenshot from latest Science for ME weekly update

#SevereME #MEcfs #PwME #SevereMECFS #VerySevereME @mecfs

ME Research UK:

An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published.

Read more: https://tinyurl.com/yc264wbm

#severeme #verysevereme #severemecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Other #SevereME people: do you consider whatever you wear as pajamas as “putting on clothes”? Or just your outside clothes you may change in to rarely when leaving?

Surveys don’t specify but it’s the second, I’ve been wayyyy overestimating my capacity

August 8th is already observed as Severe ME Day, commemorating the first recognised UK death from ME.

Expanding August to #SevereMEMonth would:

- Allow patients and caregivers to pace their involvement, in keeping with medical guidelines on energy management

- Preserve 8 August as the anchor day of remembrance and advocacy

- Enable sustained, coordinated outreach, research advocacy, and community support

#Petition by #SevereME patient Nevra:

https://www.change.org/p/declare-august-as-severe-me-awareness-month-2e6e4c25-2c9b-4040-838a-26231597ae98?utm_medium=custom_url&utm_source=share_petition&recruited_by_id=7ff81c00-ac90-11f0-8ad2-095ea43764b9

@IrishMECFSAssociation

New Fact Sheet from the Science for ME (S4ME) Forum:

"Management of severe and very severe ME/CFS"

https://s4me.info/threads/fact-sheet-4-management-of-severe-and-very-severe-me-cfs.51793/

This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies.

@mecfs

1/4

#MEcfs #SevereME #PwME #S4ME

Wie es sich anfühlt mit schwerem ME/CFS nicht mehr kommunizieren zu können:

„Mein Schmerz drang von innen gegen meine Haut, es gab keine Möglichkeit ihn nach außen zu tragen.

Ich wünschte du würdest mir unter die Haut kriechen und alles mit mir spüren. Nur für einen Moment. Dann kämst du wieder heraus und würdest sagen: dein Schmerz ist echt, ich habe ihn gesehen.“

- Alice im Nachtmeer

#SevereME #mecfs #amwriting #schreiben #bookstodon

“The more ill you become, the less care you receive” - Severe ME Inquiry Report

Article
https://www.actionforme.org.uk/the-more-ill-you-become-the-less-care-you-receive-severe-me-inquiry-report/

Report
https://www.actionforme.org.uk/wp-content/uploads/2026/08/Severe-ME-Inquiry-Report-August-2026-Action-for-ME-and-the-25-ME-Group.pdf

#SevereME #MEcfs #PwME #CFS #ME #MyalgicE @mecfs

Beautiful writing from Naomi Whittingham's blog, A Life Hidden:

"The Burden of Chronic Illness That I Rarely Talk About"

https://alifehidden.com/2026/07/30/burden/#

"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"

@mecfs

#MEcfs #PwME #SevereME #ChronicIllness #Disability

ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.

Read more: https://tinyurl.com/severemeday2026

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Online Gallery:

https://www.meaction.net/severe-me-artists-project-2026

3/3

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

Video compilation (about 16 minutes long)

https://www.youtube.com/watch?v=rRfl4tEp6tc

2/3

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

From #MEAction for Severe ME Day (Aug. 8)

"Honoring Severe ME Day & Sharing our Severe ME Artists Project 2026"

https://www.meaction.net/post/honoring-severe-me-day-sharing-our-severe-me-artists-project-2026

"#MEAction is proud to share the Severe ME Artists Project 2026!

... over 100 of you submitted photos, drawings, writing, and videos of your work! We debuted this project in 2021 and five years later we continue to be humbled and honored to bring you the work of the Severe ME community"

1/3

@mecfs

#MEcfs #SevereME #SevereMEcfs #PwME #Art #Disability

Today is Severe ME Day (August 8)

Here's a video posted by Solve ME last year:

"Hollis Mickey on Pacing with Severe M.E."

https://www.youtube.com/watch?v=5LUox41bP94

"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."

@mecfs

#SevereME #SevereMEcfs #MEcfs #PwME #SolveME

Severe ME Awareness Day

#SevereME #SevereMEDay #SevereMECFS
#SevereCFS #VerySevereME #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

RE: https://troet.cafe/@Lalelilolu/116561938964452357

Today, August 8th, is international #severeME day.

Support #research

https://mecfs-research.org/en/

#disability

For severe ME day

ME Association: Mahli Quinn Art Severe and very severe ME comic £3 A comic from Mahli Quinn that may help you convey some of the worst aspects of living with severe and very severe ME. For every comic purchased the ME Association receives a donation of 50p!

https://meassociation.org.uk/csme

#VerySevereME #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs

“People have no idea what Severe ME is like” – Nevra, Pakistan

Unfortunately, Nevra's condition keeps getting worse. If you can, please support her GoFundMe campaign.
Thanks!

🩵 https://gofund.me/919653851

Articles about Nevra:

December 2025
https://thesicktimes.org/2025/12/15/medically-neglected-and-structurally-erased-international-network-appeals-for-me-advocate-nevra-elis/

November 2024
https://www.thecanary.co/global/world-analysis/2024/11/07/nevra-mecfs-pakistan/

April 2024
https://worldmealliance.org/2024/04/people-have-no-idea-what-severe-me-is-like-nevra-pakistan/

#GlobalVoiceForME
#Pakistan
#SevereME
#MECFS
#disability
#POTS
#MCAS
#PMDD
#OCD
#Hypermobility
#endometriosis
#TMJdisorder
#CCI
#domesticviolence

A veces se hace duro ver tanta vida fuera, dejando pasar la mía entre estas paredes.
Y a la vez agradecer poder estar al día de cosas que nunca vería o sabría si no fuera por una pantalla.
Hace años el aislamiento debería ser aún más duro.

#EncefalomielitisMialgicaSevera #EncefalomielitisMialgica #MEcfs #EMsfc #SFCem #severeME #encamada #confinamiento #pacientes #cronicos #bedbound #housebound #aislamiento #isolation #soledad #lonely #Lonelines #autoimmunes #Metabólicas #autoimmune

Please #Boost

Are there any #doctors #specialists #GPs in #Melbourne giving IV or IV push #Hartmanns with #MagnesiumSulphate? For #POTS #Dysautonomia #OrthostaticIntolerance #ChronicPain, and #Migraine that’s becoming intractable.

HAVE REFERRAL. Totally legal. But doctors hate giving them. I used to get in migraine clinic until funding dried up. IV drip clinics don’t do it at all or only do if doctors jump through hoops (referral writer GP won’t). Very expensive too. I’m stuck.

Cannot absorb #magnesium unless IV and leech #potassium. Will feel very sick until eventually… Most docs don’t get it.

Any #nurses want to administer this? It can improve functionality to 50% but nobody will give it anymore and I’m stuck in bed for no reason.

Can I have my life back please 😩?

Please #boost it shouldn’t be so hard to get #medical help.

#MedMastodon
#pwME #MECFS
#SevereME
#LongCovid #Neisvoid
@LongCovid
@ChronicIllness
@migrainechat @chronicpain @dysautonomia
@migrainechatgroup
@LCNMUK
@Melbourne

👋🏻 #boost please

Any #doctors #GPs in #Melbourne giving IV or IV push #Hartmanns with #MagnesiumSulphate? For #POTS #Dysautonomia #OrthostaticIntolerance #ChronicPain. #Migraine becoming intractable.

Have referral.

Any #nurse volunteer to give this? Can improve functionality to 50% but nobody does it anymore so I’m stuck in bed for no reason.

Can I have my life back😩?

#MedMastodon
#pwME #disability
#SevereME
#LongCovid
#MECFS
#ChronicIllness
@chronicillness @mecfs @migrainechat @chronicpain