Lmst

4/
"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."

#SevereMECFS #SevereCFS #VerySevereME
@mecfs

2/‬
‪“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.”‬

‪#VerySevereME‬ #MEcfs #CFS #PwME #SevereMEcfs

@mecfs

Care instructions for how to take care of people with severe ME.

German:
https://public-health.meduniwien.ac.at/fileadmin/content/OE/public-health/Primary_Care_Medicine/PDFs/2025.8_Pflegeanleitung_MECFS.pdf

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

Austria
The Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna have published a new document with care advice for patients with (very) severe ME/CFS. The guide is in German and mostly based on the experiences of carers. It gives advice about practical things such as portable toilets, three-sided toothbrushes, customized earplugs, dimmable LED lights, etc.

#StimmenAusDemDunkel #SevereMEAwarenessDay #MECFS #MEAwareness #pwsevereME #pwverysevereME #Erfahrungsbericht #severeME #verysevereME #Awareness #ChronicIllness #Zitate #Quotes #Fatigatio

6/6

Very sad to report that longtime mutual journalist and author @bridget_oshea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS.

I’ve lost so many friends and acquaintances to #SevereME and #VerySevereME, especially during the last 8 years when I became Severe.

Will remember you always, Bridget. 💙🕯️

https://www.dignitymemorial.com/obituaries/chicago-il/bridget-oshea-12458050

Rutsche wohl endgültig in very severe ab. Habe gestern nach über drei Wochen zum ersten Mal geduscht. Bin heute komplett gecrasht. Kann kaum sprechen. Der ganze Körper ist bleischwer. Muss im Liegen essen.

Ich hab solche Angst.
#MEcfs #severeME #verysevereME

27/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 15-minute video on #SevereME & #VerySevereME: "Severe & Very Severe ME / CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome"

Includes comments from professionals (incl. Drs Muirhead/Weir/Speight/Shepherd/Nacul & Caroline Kingdon (nurse), patients & carers (incl. Association chairperson) Discusses various distressing topics http://www.dialogues-mecfs.co.uk/films/severeme/ Day 27

#mecfs
@mecfs

“For everyone, with #VerySevereME: Because you must remain silent, we must speak. Because you must suffer in your weakness, we must and may show strength. Because you cannot hear anything in your cell, we must be loud and clear in the world.” [This is a translation of this post below.]

RE: https://bsky.app/profile/did:plc:5lf3shvtwpzdbnhwnmczkc5y/post/3lpbxnzsqhs2w

11/

#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day

&

May is #MECFSawarenessmonth

Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others

https://www.youtube.com/watch?v=9_HwOUiImvw

#Day11

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

@ColleenSteckel
#MyalgicEncephalomyelitis

#MEawareness

#MEawarenessmonth

#May12awareness

#bringMEoutoftheshadows

#pwME

#SevereME

#VerySevereME

https://colleensteckelmeiccinfo.substack.com/p/making-the-invisible-visible

Trial By Error: My Visits with Alem Matthees, 2025
https://virology.ws/2025/04/14/trial-by-error-my-visits-with-alem-matthees-2025/

Explains the heroic work Alem did, the effect on the #MECFS medical scene of his work but also the health effects Alem suffered as a result, as he now tragically lives with #verysevereME. 😢

This could have been prevented if the PACE trial authors had released the data! 😡

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

Among many methodological and ethical lapses, the authors weakened their key outcome measures from what they had promised in the protocol and omitted key data from their papers. In the process, they misrepresented their findings and violated core principles of scientific research. Alem sought the missing data under a freedom of information request—a prolonged battle that ended up in a tribunal hearing in April, 2016.

In advance of the hearing, Alem prepared a massive and masterful brief and submitted it to the tribunal. That summer, the tribunal ruled in his favor and against QMUL, the institutional home of the lead author of the main PACE trial report. The subsequent data release led to the publication two years later of a definitive rebuttal of the PACE trial claims. (Alem and I were among the co-authors of this paper.) After Alem’s legal victory, it was no longer necessary to speculate about how bad the PACE results were likely to have been. The reanalysis documented that, per the measures as outlined in the protocol, the interventions did not lead to recovery, and any reported improvements were so marginal that they could easily be accounted for by bias.

4/
Part 2 of 2
It may be easier to read it this way
#SevereME
#VerySevereME
@mecfs #mecfs

Fuck I miss music. God? (Or whoever you want to attribute the perceived agency of a universe without agency too). I get it, like fine, you took away everything I used to enjoy in life. But you could at least have left me music — a tool to properly grieve… Couldn’t you? #VerySevereME

‘I am running eight marathons for my best friend Freddie and for two charities*. This is why.’

https://meassociation.org.uk/2025/01/i-am-running-eight-marathons-for-my-best-friend-freddie-and-for-two-charities-this-is-why/

While not a perfect description, good to see the plight of someone with #VerySevereME being highlighted

#MEcfs #CFS @mecfs

* ME Association ME/CFS Australia

Bateman Horne Center:

We’re excited to share the Caregiving Resource Guide — a collection of practical tips from experts and caregivers who spoke at the Severe #MECFS Caregiving Webinar Series. Many suggestions can also empower those who don’t have a dedicated caregiver.

https://bit.ly/3Yvek6W

@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

The #NHSConstitution says that the #NHS is “available to all”. A denial of service because a #ReasonableAdjustment has not been made is in breach of it and #Disability legislation.

#SevereME #VerySevereME

#DisabilityDiscrimination #DisabilityDeath

https://25megroup.org/wp-content/uploads/2024/07/Severe-ME-Awareness-Day-2024-Hospital-Care.pdf

2/

ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS & #longCOVID Patients

If this is too hard to read, see link:

https://anzmes.org.nz/press-release-anzmes-releases-essential-resource-for-healthcare-professionals-to-manage-hospital-stays-of-severe-me-cfs-and-long-covid-patients/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PASC #SevereMECFS #VerySevereME @longcovid @mecfs #alt4ME

Screenshot of guidance (there is a lot of text in this image)

Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.

Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI