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@tomkindlon.bsky.socialOct 4, 2026, 10:16 PM

New from France

Interesting long Covid research where all participants satisfy ME/CFS criteria

Evidence for transcriptomic changes impacting muscle contraction in patients with post-acute COVID-19 syndrome

www.sciencedirect.com/science/arti...

#LongCovid #MEcfs #PwME #CFS #postcovid #postcovid19

Post-acute COVID-19 syndrome (PACS) overlaps with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) but, due to frequent muscle pain and exertional intolerance, neuromuscular disorders are often suspected. We report the results of a comprehensive neuromuscular evaluation in 27 PACS patients (22F/5M; median age 41 ys). All patients developed chronic fatigue (>6 months), post-exertional malaise, and cognitive impairment, with muscle pain in 88% but no neuromuscular deficits at clinical examination. 18/27 patients were unable to work. All patients fulfilled established ME/CFS diagnostic criteria (CDC 1994, ICC 2011, Inst Medicine 2015, NICE 2021). Electrophysiological studies and CK levels were normal. Brain 18FDG-PET/MRI (14/27) showed posterior hypometabolism in 8/14. Muscle biopsy (7/27) showed moderate dysimmune changes in 2/7. Exploratory transcriptomic analyses performed in muscle biopsies from PACS patients and pre-COVID controls unveiled in PACS differentially expressed genes in the cytokine and autophagy pathways. Interestingly, other genes were also differentially expressed in pathways affecting actin, the cytoskeleton, and contraction. Indeed, we found upregulated genes involved in the troponin-tropomyosin complex, a key regulator of muscle contraction through calcium binding. We also found downregulated genes involved in the formation and stabilization of actin bundles at sarcomere Z discs and in mechanical signaling. These findings indicate that PACS patients with prominent muscular symptoms do not exhibit overt neuromuscular involvement on standard investigations but may show subtle myopathic or dysimmune changes and central metabolic alterations. At the transcriptomic level, the data show an impact on key pathways involved in contraction. The overlap with ME/CFS highlights the importance of careful differential diagnosis and suggests a complex pathophysiology beyond a basic muscle disease.
@crookedneighbor.bsky.socialOct 4, 2026, 9:04 PM

Oh hey this is my dream for #pwLC and #pwME 🏠🛌🐈

@s4me.infoOct 4, 2026, 8:33 PM

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 28 - Oct 4:

s4me.info/threads/news...

#MEcfs #PwME #LongCovid #PwLC

@litsadremousis.bsky.socialOct 4, 2026, 4:56 PM

When you've been this sick this long, other people's lives can seem so foreign.

A healthy colleague got Covid and couldn't see anyone for two wks and has turned it into a Wagnerian opera.

I feel bad for her--truly--but the other part of me is thinking, "Amateur."

#MyalgicEncephalomyelitis #pwME

@craftymissb.bsky.socialOct 4, 2026, 4:26 PM

An old pencil sketch I added colour to recently, been unable to do new art lately due to other life stuff & my painful wrist.

Anyhoo, Honesty... #sketching #art #chronichealth #pwme

Close up crop of dried Honesty in pencil and watercolour
@katybrc.bsky.socialOct 4, 2026, 4:01 PM

How dare the BPS proponents & all those who supported them think they could do this to us.
Millions of lives destroyed & incalculable suffering inflicted.

#ME #pwME #MEAwareness #MedSky

@mecvsvereniging.bsky.socialOct 4, 2026, 10:03 AM

2️⃣ Pacing betekent luisteren naar je lichaam, je energie verdelen en binnen je eigen grenzen blijven. Door te veel te pushen kunnen klachten verergeren.

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

@mecvsvereniging.bsky.socialOct 4, 2026, 10:03 AM

𝗕𝗲𝗴𝗿𝗶𝗷𝗽 𝗷𝗲 𝗠𝗘?
𝗣𝗮𝗰𝗶𝗻𝗴 𝗶𝘀 𝗯𝗲𝘁𝗲𝗿 𝗱𝗮𝗻 𝗽𝘂𝘀𝗵𝗲𝗻

Bij ME/cvs draait het niet om steeds verder over je grenzen heen gaan, maar om het vinden van een balans tussen activiteit en herstel.

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

Begrijp je ME? “Pacing is beter dan pushen” #mecvs #pwme #me #mecvsvereniging #contact #erkenning
@swastrosarah.bsky.socialOct 4, 2026, 9:00 AM

This is important. #ME #LongCovidME pose clinical challenges to every medical discipline.
#pwME the neglect of your illness is far more profound than the paradigm shift everyone has been fixated upon since the PACE debacle.
Medics urgently need proper training in safe management of #PEM

@swastrosarah.bsky.socialOct 4, 2026, 8:43 AM

GPs know these patients well. They do not have ME, so they do not have PEM. In contrast, #pwME avoid all but the most urgent medical appointments because they learn, eventually, 1) medicine is clueless, and 2) the effort in communicating their medical needs is guaranteed to trigger PEM.

@swastrosarah.bsky.socialOct 4, 2026, 6:38 AM

is cited as one of six national institutions failing #pwME #LongCovidME in the prevention of future deaths report.
The resistance to making these findings was no less in 2021-2024 than it was 2011-2015, especially from the Coroner's office www.judiciary.uk/prevention-o...

@nlizaki.bsky.socialOct 3, 2026, 9:43 PM

Correction! If you want to join Team Nevra and help make graphics, videos, do admin, & more, please message @ myspiritflora on Instagram & one of the team will get back to you asap.

gofundme.com/f/save-nevra
PayPal.me/SaveLizNevra

#pwME #MECFS #severeME #verysevereME

Photo, no description
@tomkindlon.bsky.socialOct 3, 2026, 6:30 PM

Living a rock ‘n’ roll life: doing laps of the local green air (300 metres) to check battery length of my electric wheelchair! 😜

Didn’t get a great angle for this photo when I was taking one of many breaks lying on a bench.

#MEcfs #PwME #MyalgicEncephalomyelitis #SpoonieLife #ChronicLife

Photo of me and my electric wheelchair
@tomkindlon.bsky.socialOct 3, 2026, 2:35 PM

2/
Photo of Esther Rantzen

#MyalgicE #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of Esther Rantzen
@tomkindlon.bsky.socialOct 3, 2026, 2:30 PM

I thought I would mark Esther Rantzen’s passing.

See image for my thoughts.

May she rest in peace

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

1/

Tom Kindlon's ME CFS & related page: News, Research and more Published by Tom Kindlon(tooltip)Only people who manage this Page can see who's published · about an hour ago · I thought I would mark Esther Rantzen’s passing. I remember sometimes watching “That’s Life” on BBC1 in the 1980s so feel I have known her a long time. I was very grateful when she started raising awareness of ME in the mid-1990s. At that stage, awareness levels were not at the level they are now and it was still quite a controversial condition and diagnosis. I remember in late 1997 or 1998 getting a list of press cuttings from Action for ME and a large percentage of them (maybe 35-40%) involved her! She had had huge success getting coverage of the illness. I imagine she helped many get diagnosed as well as helping in other ways. 1996 is when my mum and I started raising awareness and understanding of ME in Ireland, where awareness levels were a lot lower than in the UK. We were very grateful for her doing a long interview on Irish national radio, the Pat Kenny Show if I remember correctly. There was also a large feature in an Irish national newspaper, I think the Sunday Independent which had the largest readership then (around 1 million). I think she would have kept at it but it was Emily (her daughter) who didn’t want all the focus. I remember she quoted something her brother said that she was a grade D celebrity cripple. I disagreed with some of the things Esther Rantzen said in subsequent years e.g. about LP. But I will be forever grateful to her for her earlier campaigning work for ME. May she rest in peace.