#me-cfs — Public Fediverse posts

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

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“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

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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

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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

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

Medical invalidation is associated with structural barriers in postacute immune mediated syndromes based on patient perspectives in Germany

https://www.nature.com/articles/s41598-026-67883-2

Screenshot from latest Science for ME weekly update

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

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From paper:
"Direct overlap between disease-associated genes was limited; however, higher-order network analyses revealed substantial interconnectivity and convergence across conditions."

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

Jo Cambridge professor of rheumatology and inflammation, died in July 2026

https://www.theguardian.com/theguardian/2026/aug/28/jo-cambridge-obituary

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS @mecfs

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From X:

It even made it into an item on R4* Today programme this morning. They interviewed the lead researcher.

*BBC Radio 4

#mecfs #longcovid
@mecfs @longcovid

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Official description of the book, "Ascent of Crime", and Dr Bansal

Link:
https://www.amazon.co.uk/Ascent-Crime-Amolak-Bansal-ebook/dp/B0HDY693DJ/ref=sr_1_1

#MECFS #PwME #MyalgicEncephalomyelitis #MyalgicE
@mecfs

🧵
The new novel by retired ME/CFS expert physician, Dr Amolak Bansal, is now available on Kindle.

The main character has ME!

I haven’t seen any reviews

#MECFS #PwME #MyalgicEncephalomyelitis #MyalgicE @mecfs

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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

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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

Charity- und Aufklärungsevent
#mecfs

"Schnapp dir deine Lieblingsmenschen, komm vorbei und feier mit uns einen unvergesslichen Sonntag.

Für Kathi, für alle Betroffenen und für eine Zukunft, in der ME/CFS endlich gesehen wird.

(...) vergiss bitte nie:
Freu dich nicht zu spät." 💙

"Der gesamte Erlös (..) fließt vollständig als Spende in die Aufklärungsarbeit zu ME/CFS."

Mit dabei: #startaMEvolution e.V.

So, 06. Sep 2026

14:00 - 22:00 #Odonien

#Köln

https://rausgegangen.de/events/freu-dich-nicht-zu-spat-charity-day-party-0/?mtm_campaign=teilen_event&mtm_kwd=web

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Initially I mentioned I thought Chris Armstrong was involved but that is not correct. This study is being led by A/Prof Erin Howden at the Baker Institute. I have adjusted the first post in this thread.

#MEcfs #LongCovid #POTS

@pots @mecfs @longcovid

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Here is the link in the image
https://baker.edu.au/research/clinical-trials/friends-study
#MEcfs #LongCovid #POTS

@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

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

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“Fatigue is this term that’s so banal and non-exceptional. We accept it as completely mundane and something that everyone should be: fatigued.”

#ChronicFatigueSyndrome #MEcfs

@mecfs

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"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

Liebe Altonaer, da geht doch sicher was! Macht mit für die Altona 93 1.Frauen. Vielleicht schaffen wir es ja diese Saison aufs Treppchen.🥳
#altona93 #guterzweck #mecfs

RE: https://bsky.app/profile/did:plc:nivbrsdbseetbwgsatc22tpw/post/3mukjfdivo22d

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