#pwme — Public Fediverse posts

From Canada 🇨🇦

‘Prov[ing] What You Already Know’: The Overreliance on Medical Evidence in Adjudicating Ontario Disability Support Program Applications

Free fulltext:
https://digitalcommons.osgoode.yorku.ca/jlsp/vol38/iss1/6/

#MEcfs #chronicillness #Disability #PwME #CFS #hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
@mecfs

2/
expert reaction to study investigating shared biological mechanisms between ME/CFS, Long COVID, PTSD, Rheumatoid Arthritis, and Multiple Sclerosis

https://www.sciencemediacentre.org/expert-reaction-to-study-investigating-shared-biological-mechanisms-between-me-cfs-long-covid-ptsd-rheumatoid-arthritis-and-multiple-sclerosis/

Comment: it's great that the Science Media Centre are consulting a wider range of ME/CFS researchers

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

News Release 2-Sep-2026
Scientists uncover shared biology behind profound fatigue in five major illnesses

https://www.eurekalert.org/news-releases/1142275

Paper:
https://link.springer.com/article/10.1186/s12967-026-08874-9

UK Times article (paywalled)
https://www.thetimes.com/uk/healthcare/article/me-long-covid-chronic-fatigue-illnesses-x6rm6w5wf

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

1/

4/
Comment on my FB page:

“I’m a patient advocate for the FRIENDS study and assisted in developing the patient protocols.
[..]
They are long days but it has been broken up to allow some rest and the most physically demanding part is an optional extra.”

#CFS #LongCovid #MEcfs #POTS #PwME #CFSME

@pots @mecfs @longcovid

(Melbourne, Australia)
I was contacted to see would I highlight this as they are struggling to recruit their target.

#MEcfs #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs @longcovid #auscovid19 #PwME #CFS #ME #MyalgicEncephalomyelitis

(Melbourne, Australia)
I was contacted to see would I highlight this as they are struggling to recruit their target.

I haven't done a deep vet but see that Chris Armstrong is involved which reassures me

#MEcfs #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs @longcovid #auscovid19 #PwME #CFS #ME #MyalgicEncephalomyelitis

(Melbourne, Australia)
I was contacted to see would I highlight this as they are struggling to recruit their target.

I haven't done a deep vet but see that Chris Armstrong is involved which reassures me

#MEcfs #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs @longcovid #auscovid19 #PwME #CFS #ME #MyalgicEncephalomyelitis

(Melbourne, Australia)
I was contacted to see would I highlight this as they are struggling to recruit their target.

I haven't done a deep vet but see that Chris Armstrong is involved which reassures me

#MEcfs #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs @longcovid #auscovid19 #PwME #CFS #ME #MyalgicEncephalomyelitis

(Melbourne, Australia)
I was contacted to see would I highlight this as they are struggling to recruit their target.

I haven't done a deep vet but see that Chris Armstrong is involved which reassures me

#MEcfs #LongCovid #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs @longcovid #auscovid19 #PwME #CFS #ME #MyalgicEncephalomyelitis

From Belgium 🇧🇪

Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden

https://link.springer.com/article/10.1186/s12967-026-08824-5

Screenshot from latest Science for ME weekly update

#MEcfs #Fibromyalgia #PwME #CFS
@mecfs

From Belgium 🇧🇪

Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden

https://link.springer.com/article/10.1186/s12967-026-08824-5

Screenshot from latest Science for ME weekly update

#MEcfs #Fibromyalgia #PwME #CFS
@mecfs

From Belgium 🇧🇪

Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden

https://link.springer.com/article/10.1186/s12967-026-08824-5

Screenshot from latest Science for ME weekly update

#MEcfs #Fibromyalgia #PwME #CFS
@mecfs

From Belgium 🇧🇪

Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden

https://link.springer.com/article/10.1186/s12967-026-08824-5

Screenshot from latest Science for ME weekly update

#MEcfs #Fibromyalgia #PwME #CFS
@mecfs

From Belgium 🇧🇪

Epigenome-wide profiling identifies distinct DNA methylation architecture underlying ME/CFS and fibromyalgia symptom burden

https://link.springer.com/article/10.1186/s12967-026-08824-5

Screenshot from latest Science for ME weekly update

#MEcfs #Fibromyalgia #PwME #CFS
@mecfs

2/

"Emily Lim Rogers looks at the labor it takes simply to exist while sick in her new book Sick Work: Exhaustion, Labor, and Invisible Illness, through the lens of ME/CFS. We spoke about the history of the condition..."

#PwME #MEcfs

@mecfs

Living with ME & fibromyalgia: ‘In 10 years, I had 10 pregnancies. It was a decade of loss, & a fight to get the family we wanted’ (Paywall)

https://www.independent.ie/lifestyle/living-with-me-and-fibromyalgia-in-10-years-i-had-10-pregnancies.-it-was-a-decade-of-loss-and-a-fight-to-get-the-family-we-wanted/a/160468721.html

Link for Dublin Fringe Festival's "Chronically Hopeful", Sept 6-9

https://www.fringefest.com/festival/whats-on/chronically-hopeful

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

Living with ME & fibromyalgia: ‘In 10 years, I had 10 pregnancies. It was a decade of loss, & a fight to get the family we wanted’ (Paywall)

https://www.independent.ie/lifestyle/living-with-me-and-fibromyalgia-in-10-years-i-had-10-pregnancies.-it-was-a-decade-of-loss-and-a-fight-to-get-the-family-we-wanted/a/160468721.html

Link for Dublin Fringe Festival's "Chronically Hopeful", Sept 6-9

https://www.fringefest.com/festival/whats-on/chronically-hopeful

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

Living with ME & fibromyalgia: ‘In 10 years, I had 10 pregnancies. It was a decade of loss, & a fight to get the family we wanted’ (Paywall)

https://www.independent.ie/lifestyle/living-with-me-and-fibromyalgia-in-10-years-i-had-10-pregnancies.-it-was-a-decade-of-loss-and-a-fight-to-get-the-family-we-wanted/a/160468721.html

Link for Dublin Fringe Festival's "Chronically Hopeful", Sept 6-9

https://www.fringefest.com/festival/whats-on/chronically-hopeful

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

Living with ME & fibromyalgia: ‘In 10 years, I had 10 pregnancies. It was a decade of loss, & a fight to get the family we wanted’ (Paywall)

https://www.independent.ie/lifestyle/living-with-me-and-fibromyalgia-in-10-years-i-had-10-pregnancies.-it-was-a-decade-of-loss-and-a-fight-to-get-the-family-we-wanted/a/160468721.html

Link for Dublin Fringe Festival's "Chronically Hopeful", Sept 6-9

https://www.fringefest.com/festival/whats-on/chronically-hopeful

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

Living with ME & fibromyalgia: ‘In 10 years, I had 10 pregnancies. It was a decade of loss, & a fight to get the family we wanted’ (Paywall)

https://www.independent.ie/lifestyle/living-with-me-and-fibromyalgia-in-10-years-i-had-10-pregnancies.-it-was-a-decade-of-loss-and-a-fight-to-get-the-family-we-wanted/a/160468721.html

Link for Dublin Fringe Festival's "Chronically Hopeful", Sept 6-9

https://www.fringefest.com/festival/whats-on/chronically-hopeful

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

“The Relentless Work of Being Sick”

“A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.”

https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/

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

“The Relentless Work of Being Sick”

“A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.”

https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/

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

“The Relentless Work of Being Sick”

“A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.”

https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/

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

“The Relentless Work of Being Sick”

“A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.”

https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/

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

“The Relentless Work of Being Sick”

“A new book examines the labor of getting chronic illness diagnosed and treated—for those lucky enough to get care.”

https://www.motherjones.com/media/2026/09/rogers-sick-work-duke-press-qa-interview-chronic-illness/

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

“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

“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

“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

“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

“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

ME/CFS charity & awareness event in Cologne, Germany 🇩🇪

https://www.reddit.com/r/cfs/comments/1vzptcw/a_huge_mecfs_awareness_event_is_happening_in

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

ME/CFS charity & awareness event in Cologne, Germany 🇩🇪

https://www.reddit.com/r/cfs/comments/1vzptcw/a_huge_mecfs_awareness_event_is_happening_in

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

ME/CFS charity & awareness event in Cologne, Germany 🇩🇪

https://www.reddit.com/r/cfs/comments/1vzptcw/a_huge_mecfs_awareness_event_is_happening_in

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

ME/CFS charity & awareness event in Cologne, Germany 🇩🇪

https://www.reddit.com/r/cfs/comments/1vzptcw/a_huge_mecfs_awareness_event_is_happening_in

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

ME/CFS charity & awareness event in Cologne, Germany 🇩🇪

https://www.reddit.com/r/cfs/comments/1vzptcw/a_huge_mecfs_awareness_event_is_happening_in

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

From the NIH's in-patient study in the US

Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

https://www.nature.com/articles/s41598-026-64807-y

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

From the NIH's in-patient study in the US

Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

https://www.nature.com/articles/s41598-026-64807-y

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

From the NIH's in-patient study in the US

Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

https://www.nature.com/articles/s41598-026-64807-y

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

From the NIH's in-patient study in the US

Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

https://www.nature.com/articles/s41598-026-64807-y

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

From the NIH's in-patient study in the US

Functional enrichment of immune targeted gut microbiota in post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

https://www.nature.com/articles/s41598-026-64807-y

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

"Congress can finally make progress on this chronic disease" by Dr Subramani Seetharama

https://ctmirror.org/2026/08/31/congress-can-finally-make-progress-on-this-chronic-disease/

#MEcfs #PwME #CFS @mecfs

"Congress can finally make progress on this chronic disease" by Dr Subramani Seetharama

https://ctmirror.org/2026/08/31/congress-can-finally-make-progress-on-this-chronic-disease/

#MEcfs #PwME #CFS @mecfs

"Congress can finally make progress on this chronic disease" by Dr Subramani Seetharama

https://ctmirror.org/2026/08/31/congress-can-finally-make-progress-on-this-chronic-disease/

#MEcfs #PwME #CFS @mecfs

"Congress can finally make progress on this chronic disease" by Dr Subramani Seetharama

https://ctmirror.org/2026/08/31/congress-can-finally-make-progress-on-this-chronic-disease/

#MEcfs #PwME #CFS @mecfs

"Congress can finally make progress on this chronic disease" by Dr Subramani Seetharama

https://ctmirror.org/2026/08/31/congress-can-finally-make-progress-on-this-chronic-disease/

#MEcfs #PwME #CFS @mecfs

From @onelife_livedwell on IG:
Let’s talk about the unofficial evaluation that can determine belief, treatment, or accommodations. What’s being measured is legibility in the eyes of the system you’re dealing with.

#mecfs #fibromyalgia #invisibleillness #pwme #cfs @mecfs

Symptom: Neurogenic Inflammation and POTS Blood Pooling

https://www.illmarks.com/symptom-neurogenic-inflammation-and-pots-blood-pooling/

#art #autonomicDysfunction #AutonomicFailure #autonomicNervousSystem #bloodpooling #BloodPressure #bodyHorror #bodyMapping #bodyart #bodyhorror #cardiology #chronicIllness #dinet #dystautonomia #hypotension #longCovid #medart #medicalArt #medicalart #MillionsMissing #neurogenicInflammation #neurogenicInflammation #neurology #orthostaticHypotension #orthostaticIntolerance #posturalOrthostaticTachycardiaSyndrome #POTS #potsie #pwLC #pwme #SciArt #SciComms #SymptomMap #SymptomArt #SymptomMap #tinitus #tinnitus

New from Japan:

Repetitive Transcranial Magnetic Stimulation Ameliorates Symptoms in Patients with #MyalgicEncephalomyelitis (#ChronicFatigueSyndrome)

Free fulltext:
https://www.ibroneuroreports.org/article/S2667-2421(23)02277-7/fulltext

Note: not a double-blind, placebo-controlled study

#MEcfs #CFS #PwME #MyalgicE @mecfs #rTMS

New:
"The Rise and Fall of the Psychosomatic Approach to #MedicallyUnexplainedSymptoms, #MyalgicEncephalomyelitis and #ChronicFatigueSyndrome

Free full text:
https://www.opastpublishers.com/peer-review/the-rise-and-fall-of-the-psychosomatic-approach-to-medically-unexplained-symptoms-myalgic-encephalomyelitis-and-chronic--4899.html

Great to see an eminent academic psychologist from outside the ME community, Dr David Marks, write a detailed review (with 283 references) like this

#MEcfs #CFS #MyalgicE #PwME #MUS #MedicallyUnexplained