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@mira-kama.bsky.social

Things I did before I got M.E. 🎧🎤🎭💃🏻🪩🩰👯‍♀️🎾📚🚴‍♀️🥾⛰️🧶👾 Things I can do now. a little bit. sometimes 🪴🧶

6 Followers  |  30 Following  |  1 Posts  |  Joined: 22.01.2025  |  2.0218

Latest posts by mira-kama.bsky.social on Bluesky

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3 Biological Neuroimmune Subtypes in Post-COVID & ME/CFS 🔬❕

We mapped our @amaticahealth post-COVID + ME patients into three distinct biological clusters using Neuroimmune markers

Cluster 1; mitochondrial stress
Cluster 2; Non inflammatory
Cluster 3; Neuro inflammatory

🧵 👇🏻

24.06.2025 15:27 — 👍 20    🔁 12    💬 1    📌 1
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🧵We clustered our patients based on metabolic / O₂-sensing / mitochondrial markers.

Two distinct subgroups appeared, showing potential differences in underlying metabolic function.

We also looked at which other markers separated them.

Here’s what we found 👇

05.06.2025 18:11 — 👍 4    🔁 1    💬 1    📌 0

Absolut!! Ganz ganz schlimm der Typ

06.08.2025 08:46 — 👍 0    🔁 0    💬 0    📌 0
The Rantzen Report, 5th August 1996
YouTube video by RFH1955 The Rantzen Report, 5th August 1996

Twenty-nine years ago right now this was broadcast in the UK...
#myalgicencephalomyelitis #myalgice #mecfs

youtu.be/TncbadR41NE

05.08.2025 18:42 — 👍 12    🔁 9    💬 0    📌 1
More home visits, for example for dentistry, blood tests, physio, eye tests, smear tests and consultations, scheduled at a time that works for the patient.
More remote appointments.
Longer appointments.
The ability to submit written information in advance to minimise talking time and shorten appointments.
Basic infection control measures in place, such as staff wearing high quality masks and appropriate ventilation in the building.
Better designed GP surgeries and hospitals—for example, waiting areas available that are quiet and dimly lit and thought given to how people will get to the different departments they may need to attend.
Joined up thinking and communication between departments treating co-morbid conditions—for example, endocrinology, neurology, rheumatology, gastroenterology, allergy clinic, etc
Appropriate in-patient care for severe patients when hospital admission cannot be avoided, in a supportive caring environment, utilising evidence-based support and designed for those with heightened sensitivities. 
An advocacy service, where someone with extensive experience of ME can accompany and act as spokesperson to negotiate and navigate existing systems with the patient who is unable to advocate on their own behalf.
All staff throughout the NHS to have sufficient training on Long Covid/ME (including receptionists, as well as primary and secondary healthcare professionals).

More home visits, for example for dentistry, blood tests, physio, eye tests, smear tests and consultations, scheduled at a time that works for the patient. More remote appointments. Longer appointments. The ability to submit written information in advance to minimise talking time and shorten appointments. Basic infection control measures in place, such as staff wearing high quality masks and appropriate ventilation in the building. Better designed GP surgeries and hospitals—for example, waiting areas available that are quiet and dimly lit and thought given to how people will get to the different departments they may need to attend. Joined up thinking and communication between departments treating co-morbid conditions—for example, endocrinology, neurology, rheumatology, gastroenterology, allergy clinic, etc Appropriate in-patient care for severe patients when hospital admission cannot be avoided, in a supportive caring environment, utilising evidence-based support and designed for those with heightened sensitivities. An advocacy service, where someone with extensive experience of ME can accompany and act as spokesperson to negotiate and navigate existing systems with the patient who is unable to advocate on their own behalf. All staff throughout the NHS to have sufficient training on Long Covid/ME (including receptionists, as well as primary and secondary healthcare professionals).

2/
"What needs to be done to improve services?

There were lots of suggestions from patients and carers on how services could be improved. Here are the 10 that stood out:"

www.pslhub.org/learn/improv...

#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

27.07.2025 21:54 — 👍 3    🔁 3    💬 1    📌 0
Trial By Error: After ME-Related Suicide, Second Coroner in England Issues "Report to Prevent Future Deaths" | Virology Blog By David Tuller, DrPH A coroner in west England has called out the shortage of services for those with severe ME after conducting an inquest into the case o ...

From @davetuller1.bsky.social

Another coroner in England issues "report to prevent future deaths" in case of ME-related death.

virology.ws/2025/07/21/t...

#SevereME #MEcfs

24.07.2025 20:22 — 👍 21    🔁 12    💬 1    📌 1

Jeder, der die #DGN -"Stellungnahme zum Forschungsstand bei #MECFS" erwähnt, hat bereits eine Quelle mehr genannt als die Stellungnahme selbst.

Das finde ich schon ziemlich bemerkenswert für eine Fachgesellschaft und diejenigen, die sich darauf berufen.

23.07.2025 14:34 — 👍 106    🔁 23    💬 2    📌 1
Preview
Immunisierung statt Information – zum ME/CFS-Statement der DGN Die Deutsche Gesellschaft für Neurologie (DGN) hat eine Stellungnahme zu ME/CFS veröffentlicht, das sich dem Titel nach als sachliche Information über den Forschungsstand ausgibt. Doch wer den Text…

@uendruscheit.bsky.social
Danke für die wunderbare Entgegnung auf die unrühmliche „Stellungnahme“ der @dgn-ev.bsky.social zur schweren neuroimmunologischen Multisystemerkrankung #MECFS.

scienceandsenseblog.wordpress.com/2025/07/22/i...

23.07.2025 11:53 — 👍 22    🔁 5    💬 1    📌 0

Danke, wo kann ich unterschreiben?!

Würde noch ergänzen: Klar kann mensch Evidenz monieren, ohne bei seinen Ausführungen auch nur eine einzige wissenschaftliche Referenz anzuführen, es ist nur mehr als wissenschaftlich fragwürdig...

23.07.2025 08:06 — 👍 47    🔁 17    💬 1    📌 0

Die #DGN Stellungnahme zu #MECFS sorgt für Wirbel - in Kürze nur in meinem #Newsletter einige Hintergründe dazu, auch zur Rolle einzelner Beteiligter. Kostenlos anmelden: www.martin-ruecker.com/newslette

22.07.2025 22:27 — 👍 29    🔁 5    💬 5    📌 3

Also ja, man kann viele dieser Punkte sehr berechtigt machen.

Aber man sollte halt auch die richtigen Schlüsse daraus ziehen.

10/10

22.07.2025 18:26 — 👍 138    🔁 3    💬 5    📌 0

Als Neurologe begrüßt man es an sich, dass die @dgn-ev.bsky.social, normal ohne erkennbare akademische oder klinische Beschäftigung mit #MECFS, ein Statement dazu abgibt.

Leider ist wenig nach vorne gewandtes dabei...

1/10

22.07.2025 18:26 — 👍 233    🔁 105    💬 13    📌 10

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