Lmst

"Für viele der schweren Fälle [von #MECFS] ist es undenkbar das Bett, das Zimmer oder die Wohnung zu verlassen. Für andere, meist leichtere Fälle dagegen bleibt die tiefe Sehnsucht wieder am Leben teilzunehmen. Auch durch Reisen", heißt es im Beitrag "Abschied vom Reisen".

Vielen Dank an alle Beteiligten!

#LongCovid #Barrierefreiheit #Sommerzeit #Reisen #rbb #Radio #Hörtipp #UnserLeben #Sozialteam #pwME https://mastodon.social/@rbb24
2/2

Oh-ho, the infamous Science Media Centre are back... #mecfs #pwme #longcovid

RE: https://bsky.app/profile/did:plc:yimzjkoodx3avodvufaugtag/post/3ls7wyqs3n22e

2025_6_13 I(carus) scheduled two phone calls on the same day

https://www.illmarks.com/2025_6_13-icarus-scheduled-two-phone-calls-on-the-same-day/

#bodyHorror #cfw #chronicIllness #ChronicFatigueSyndrome #longcovid #me #meCfs #mecfs #MillionsMissing #MyalgicEncephalomyelitis #pem #pese #postExertional #postexertionalmalaise #postexertionalsymptomexacerbation #pwLC #pwme

On a manilla bookmark, the human figure is traced in dark dark blue and has vibrant purple wings which are melting and dripping. some of the drippy ooze is on their body, including in their brainspace. The figure has eyes which are tightly shut and mouth in a tight frown.the dripping is rendered with undulating lines and is the location of the most contrast, drawing the eye down past the figure's legs.

Edinburgh Study Links ME/CFS to “Blood-Based Biomarkers” By David Tuller

https://virology.ws/2025/06/21/trial-by-error-edinburgh-study-links-me-cfs-to-blood-based-biomarkers/

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

Trial By Error: Edinburgh Study Links ME/CFS to “Blood-Based Biomarkers”
2 Comments / By David Tuller / 21 June 2025
By David Tuller, DrPH

Last fall, a team from the University of Edinburgh released a pre-print called “Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity.” At the time, I posted an interview with the lead investigator, Chris Ponting, a professor of genetics at the university.

The peer-reviewed version of the study has just been published by the journal EMBO Molecular Medicine. According to a press release from the University of Edinburgh, “The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.” The work involved collaboration between the university’s Institute of Genetics and Cancer and the Schools of Mathematics and Informatics.

2/
“While slight improvements were observed in mental health and physical health indicators and the severity of ME/CFS-specific symptoms, symptoms remained severe and persistent over time, regardless of care model"

#MEcfs #CFS #PwME
@mecfs @fibromyalgia

New Zealand:
Prof. Warren Tate from Otago University was interviewed on RNZ's Saturday Morning programme. Discussing his group's recent preprint and his hopes for a clinically accessible biomarker test in the future.

Info & recording:
https://www.rnz.co.nz/national/programmes/saturday/audio/2018992365/approaching-life-changing-diagnosis-for-missing-millions-with-me-cfs

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

I deserve no sympathy for this, but due to genuinely feeling great yesterday, I did a little too much and so today is a crash day.

I don’t regret it… I really needed a break from day-to-day chronic health sh*t, even if it cost me. It has been months of declines, lots of confusion and grieving. Yesterday I had a little reprieve 💚

I believe I finally learned how to stop the decline of my ME/CFS (thanks to the Visible app that highlighted POTS issues). Yesterday was like a reward for having made so many helpful changes, even if it meant shrinking my life even further. @mecfs #pwME

A 6-panel comic, entitled “M.E. How it can shrink one’s life bits by bits.”

The first panel features that main title. The second is labelled “Before M.E.” and shows a landscape with symbolic features: a work building, a cafe, a plane representing travel, a party, a mountain with campfire and tent, a gym and a home with garden.

The third panel is labelled “Mild M.E.” It only showed a home and a work building on an island with nothing else accessible around it.

The fourth panel is labelled “Moderate M.E.” It shows just a home on the island.

The fifth label is labelled “Severe M.E.” and features only a bed, not even the whole home, on a tiny island.

The sixth panel is labelled “Very severe M.E.” and the entire panel is dark grey only.

Note: there are no official criteria for these severity levels and M.E. is highly variable, from person to person and also for each person over time.

When I see someone walking freely like that, in a film, or on TV, I always think what nice feeling that would be again, to walk around freely like that, without feeling you've got lead weights in your bones, like it has done the last 30+ years. #mecfs #pwME #longcovid

Just watching the #bansheesofinistern, and Colin Farrell at the start, walking freely round town at the pace he chooses. #mecfs #pwME #longcovid

New:
"Cognitive dysfunction in ME/CFS, its causes, and treatment avenues: a conversation with Dr Amolak S Bansal – Immunologist and Allergist"

https://forums.phoenixrising.me/threads/cognitive-dysfunction-in-me-cfs-its-causes-and-treatment-avenues-a-conversation-with-dr-amolak-s-bansal-immunologist-and-allergist.93476/

Sad to read this UK-based doctor is now fully retired from clinical practice 🙁

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

@mecfs
Last quote:

"Blood differences are sometimes attributed to reduced activity levels, rather than ME/CFS directly. By applying very recent advances in the statistical and causal inference literature, our study provides strong evidence that ME/CFS affects blood traits through paths other than activity."

- Dr Sjoerd Beentjes

Discussion of this research can be found on the Science for ME forum here:

https://www.s4me.info/threads/replicated-blood-based-biomarkers-for-myalgic-encephalomyelitis-not-explicable-by-inactivity-2024-beentjes-ponting-et-al.39964/page-10#post-618219

#MEcfs #PwME #PEM #Research #Science4ME

@mecfs

https://www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed

Another quote:

"Some 116 significant differences were found in both men and women, a key finding as ME/CFS can affect sexes differently. The consistent results across both groups strengthens the reliability of the biomarkers, experts say.

The strongest biomarker differences were found in people who reported symptoms consistent with post-exertional malaise, highlighting its central role in the illness."

#MEcfs #PwME #PEM #Diagnosis #Research

"Scale of how ME/CFS affects blood revealed"

https://www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed

"People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness."

This is early research, not a diagnostic test yet! The wording in some articles has been misleading.

@mecfs

#MEcfs #PwME #Diagnosis #Research

Recap for Bateman Horne Center Support Group: Love Relationships and Illness May 20, 2025

https://batemanhornecenter.org/wp-content/uploads/2025/06/20250520-Support-Group-Recap.pdf

Hashtags:
#chronicillness #Spoonielife #chroniclife @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
@disability @longcovid
#LongCovid #PASC @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #dysautonomia @dysautonomia #chronicpain @chronicpain #POTS @pots

⬆️

2 days to go to this Dublin 15 event. People with #longcovid welcome.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@IrishMECFSAssociation @mecfs

I love it when you realise there's something you really need, but then forget to note it down, then forget, & are left with the memory that there's something you need, but not sure what,& now you somehow have to trigger the thought pathway to make you remember again #brainfog #mecfs #pwME #longcovid

@mecfs @longcovid

This study is being discussed on the Science for ME forum here:

https://www.s4me.info/threads/replicated-blood-based-biomarkers-for-myalgic-encephalomyelitis-not-explicable-by-inactivity-2024-beentjes-ponting-et-al.39964/page-10#post-618219

#MEcfs #PwME

"Simple blood test could provide first reliable diagnosis for ME"

https://www.thetimes.com/article/72d96202-0551-4c68-8c79-2ca903caf059

"Discovery of signature patterns of molecules in the blood of ME patients may signify a turning point in diagnosis, typically made by ruling out other illnesses"

@mecfs @longcovid

#MEcfs #LongCovid #PwME #PwLC #Diagnosis #Research

Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts.

The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls.

Professor Chris Ponting, of the university’s Institute of Genetics and Cancer, said: “For so long people with ME/CFS have been told it’s all in their head. It’s not. We see [it] in their blood.

News release:
"People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness"

https://www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed

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

Home
The University of Edinburgh
News
Scale of how ME/CFS affects blood revealed
Scale of how ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness.

White male lying in a bed looking tired
The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.

Significantly, the results were mostly unaffected by patients’ activity levels, as low activity levels can sometimes hide the biological signs of illness, experts say.

Very, very long overdue. The vested interests psychology and health insurance will fight tooth and nail for one not to be accepted, though. #mecfs #pwME #longcovid

RE: https://bsky.app/profile/did:plc:mecmaaw6e7xacyh3fw2yeofi/post/3lrzximzvsi2f

#pwme

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