#me-cfs — Public Fediverse posts

🧵
ME Research UK

We are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative.

https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/

#MEcfs #PwME #CFS #BrainFog @mecfs

1/

ME Research UK:

ME Research UK's August e-newsletter was sent to inboxes throughout the world earlier today.

Not on our list?
Sign up - https://tinyurl.com/5n94u488 or read online - https://tinyurl.com/4n4rnpmu

#mecfs #cfs #pwme #MyalgicEncephalomyelitis @mecfs

6/

There’s an article in the Sunday Times on this today: “ME patients are told nothing’s wrong, my fatigue theory shows there is”
#mecfs
@mecfs @longcovid

4/
“And this leads to the third harm: the physical damage caused by the system’s response to the illness.”

#PwME #MyalgicEncephalomyelitis #MEcfs
@mecfs

RE: https://social.saarland/@achim/117220772698874452

Fühle dich von ❤ gedrückt, liebe @afelia ! Ich wünsche dir, dass dein Zustand sich bald bessert 🌻
Und ich danke dir für deine wie immer wahren und wohl gewählten Worte. Die Frage nach dem Wert ist für mich in einem Crash immer noch fast unerträglich. Wortmeldungen wie deine sind da bisweilen sehr wertvoll und tröstend. Danke, dass du sichtbar bleibst! 🫂
#mecfs #chronischkrank #chronicillness

RE: https://chaos.social/@afelia/117220650097096359

Danke dafür, dies mit uns geteilt zu haben.

#mecfs #chronischkrank

"Burnout" as an insult is an example of abuse culture — societal DARVO that we were conditioned to accept without question.

#AbuseCulture #MECFS

3/
“But the second harm comes from disbelief and invalidation. Instead of receiving understanding and support, many of us encounter questioning, doubt and dismissal. This is not only something that happened in the past. It continues today. My symptoms are still questioned, my limitations are still doubted, and I still have to justify that I am genuinely ill.”

#mecfs #pwme #cfs
@mecfs

2/
“The first harm is the disease itself: the biological damage caused by a serious, disabling illness. This is the harm that research is trying to address. We urgently need better diagnosis, effective treatments and, ultimately, a cure.”

#MyalgicEncephalomyelitis #PwME
#mecfs
@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

5/
“Participant shared that constantly calculating whether their body can handle an activity had made them feel “incompetent”, until they recognized that this calculation is not incompetence but triage, a precise management of a limited resource and a skill most healthy people never have to build...”

#mecfs #LongCovid
@mecfs @longcovid

5/
“Documentation is part of that advocacy: clearly recording functional limitations, symptom exacerbation, environmental barriers, and necessary supports can make the difference in whether a patient can receive equipment, home-based services, disability benefits, or appropriate care.”

#mecfs #pwme #cfs
@mecfs

4/
“It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

#chronicillness #spoonie #mecfs #longcovid
@mecfs @longcovid

Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf

#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

1/

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

‪2/‬
‪Description from an ME caregiver:‬

‪“Amy Mooney (parent, caregiver, occupational therapist) has excellent advice for healthcare providers regarding people with severe/very severe ME”‬

‪#PwME #MyalgicEncephalomyelitis‬ @mecfs #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

4/
“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed”

#MEcfs #LongCovid #PwME #CFS

@mecfs @longcovid

3/
“I know it’s cliche, but we truly can’t pour from an empty cup.”

#MEcfs #PwME #CFS #LongCovid

@mecfs @longcovid

2/
“Does anyone else think of the protocol when flying, ‘secure your own oxygen mask first’? Remembering it sometimes helps me give myself permission to look after my own needs first before helping others.”

#mecfs #longcovid
@mecfs @longcovid

"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"

From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf

#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS

1/

Great to see these CDC ME/CFS events back again 🙂

Friday, September 18:
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

https://events.gcc.teams.microsoft.com/event/04730f5b-7739-4929-9f6b-d76de6db25a9@9ce70869-60db-44fd-abe8-d2767077fc8f?source=copyLinkLegacyShareLinkDialog

Link gives time in your time zone

Event includes a Question and Answer section

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

2/

“With IBS so common in patients with ME/CFS, routine IBS screening may be warranted, the study advised. Likewise, patients with IBS and profound fatigue, post-exertional malaise, or unrefreshing sleep should be evaluated for ME/CFS.”

#IBS #CFS #MEcfs #PwME #IrritanleBowelSyndrome

@mecfs

🧵
Physician's Weekly: IBS affects over a third of people with ME/CFS

https://www.physiciansweekly.com/post/irritable-bowel-syndrome-affects-over-a-third-of-patients-with-me-cfs

#IrritableBowelSyndrome #MEcfs #IBS #PwME #CFS @mecfs

1/

3/
Dr Bansal told me it was being sold on Amazon and this looks like it means it is sold in the different Amazon’s around the world

#MyalgicEncephalomyelitis #PwME
#mecfs
@mecfs

5/
Lots of discussion on this on my FB page where one of the researchers has now started responding to comments

#MEcfs #POTS #LongCovid #CFS #PwME

https://www.facebook.com/share/168aP92y89K/?mibextid=wwXIfr

@pots @mecfs @longcovid