Tom Kindlon

Neuromuscular Disorders Volume 53, Supplement, September 2025, 105492 Neuromuscular Disorders 29PMyological evaluation of patients with post-acute COVID-19 syndrome Author links open overlay panel F. Authier 1 2 , M. Aoun Sebaiti 1 , S. Souvannanorath 1 2 , E. Malfatti 1 2 , E. Itti 1 2 , G. Severa 1 2 1 Paris Est Creteil University, Créteil, France 2 Henri Mondor University Hospital, Créteil, France Available online 3 October 2025, Version of Record 3 October 2025. What do these dates mean? Show less Add to Mendeley Share Cite https://doi.org/10.1016/j.nmd.2025.105492 Get rights and content Post-acute COVID-19 syndrome (PACS) is a highly multifaceted condition, mimicking myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in patients with the most prolonged evolution. Due to the frequency of muscle pain and exertion intolerance, these patients are often suspected of having a muscular disease. Here we present the results of the neuromuscular evaluation of patients with a clinically defined PACS. Twenty-two consecutive PACS patients (17F, 5M; median age 47 yrs) were included. All had at least one Covid-infection, confirmed by PCR, with mild respiratory symptoms, only one having required hospitalization and transfer to intensive care unit at acute stage. After a variable period between weeks to few months, patients developed chronic fatigue (duration > 6 months; n=22, 100%), post-exertional malaise (n=22, 100%), cognitive impairment including short-term memory loss or “brain fog” (n=22, 100%), muscle pain (n=18, 82%). No other specific neuromuscular clinical sign were found. 100% of patients fulfilled diagnostic criteria for ME/CSF: CDC1994/Fukuda, International Consensus Criteria 2011, US Inst Medicine 2015, UK National Institute for health and Care Excellence, 2021. Nineteen (86%) didn’t show any recovery period after the onset of symptoms. ENMG examination was normal, without myogenic pattern; CK levels were normal; and muscle MRI available in f…

From France:

"Myological evaluation of patients with post-acute COVID-19 syndrome".
All 22 had ME/CFS

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

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid

COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK — Dempsey et al. "Our study found that prolonged COVID-19 symptoms are associated with increased sickness absence in HCWs in England." "We acknowledge that LC is an episodic condition, and periodic symptom relapses may mean that people with the condition require sickness absence and/or workplace adjustments, even after first returning to work post-infection"

From the UK

COVID-19-related sickness absence among 4,721 NHS staff in England and its relation with long COVID symptoms: findings from NHS CHECK

bmchealthservres.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers — Frederique C Ponchel "Our most important findings however relate to the multiple patterns observed and the overlap (or exclusion) of some features, defining clusters of patients within a syndrome rather than a unique disease (still taken with caution due to small numbers)."

From the UK

Immunological and non-immunological features specific to Long-COVID: multiple overlapping aetiologies and potential biomarkers

www.medrxiv.org/content/10.1...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America — Carrión-Nessi et al. "In this cohort, AIWS was a notable feature in adults with persistent headache after COVID-19, particularly in younger individuals with a history of migraine. Experiencing AIWS symptoms during acute infection increased the odds of post-acute AIWS symptoms nearly tenfold, suggesting SARS-CoV-2 may be a potent trigger."

From Latin American countries

Exploring Alice in Wonderland syndrome in adults with persistent headache after COVID-19: a cross-sectional study in Latin America

bmcneurol.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #AIWS

Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID — Mikael Björnson et al. "we can confirm, in agreement with previous studies, that roughly one-third of highly symptomatic long COVID patients suffer from POTS, compared with an estimated prevalence of POTS in general population of 0.2% to 1%." "All groups had Frändin-Grimby scores concordant with an active lifestyle before disease onset" "In our cohort, the prevalence of comorbidities and history of psychiatric illness lies well within or below the range of the Swedish population"

From Sweden:

Prevalence and Clinical Impact of Postural Orthostatic Tachycardia Syndrome in Highly Symptomatic Long COVID

www.ahajournals.org/doi/10.1161/...

Screenshot from latest Science for ME weekly update

#LongCovid #POTS

4/
"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."

#SevereMECFS #SevereCFS #VerySevereME

3/

"As I once wrote to a friend: 'At times I’ve felt myself suspended between elation at discovering a simple pleasure, and despair at the reminder of just how much normality has been denied me.'”

#SevereME #MEcfs

Solve M.E. logo above text about government shutdown impacts on ME/CFS, Long COVID, and IACCI communities in muted green on teal background.

The federal government has shut down, and the impacts are already being felt across systems and services our community depends on. Read our summary of the key areas of impact and tips on ways to stay connected:
solvecfs.org/government-s...

Banner showing young researcher publicisng the Invest in ME Research Summer Student bursaries for 2025

Invest in ME Research Summer Student Bursaries 2025 - Addendum

The IiMER bursaries offered hands-on experience in cutting-edge research focusing on ME

www.investinme.org/iimer-newsle...
#research #MedEd#mecfs #InvestinMEresearch

Upcoming events in October 2025 by Bateman Horne Center: Coffee with a Clinician on Oct 8, and Support Groups on Oct 14 & 21.

Upcoming in Oct! 💙
☕ Oct 8 – Coffee with a Clinician: Navigating Clinical Uncertainty
💬 Oct 14 – Support Group: Healthcare & Self-Advocacy
💬 Oct 21 – Support Group: Parenting w/ Chronic Illness

Free & open to all. Register: https://bit.ly/48DiM7Q

YouTube video by Broken Battery Natasha Devon - Long-term sickness call in

On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins)

youtu.be/BoVpKmsTNFY?...

2/

bsky.app/profile/dave...

📢 Participants needed! The GLOW Trial is studying gut-based therapy for Long COVID at Uni Hospital Geelong. If you’re 18–65 with moderate–severe symptoms, you may be eligible.

Learn more 👉 CTUClinicalTrialsUnit@barwonhealth.org.au | 📞 (03) 4215 3078

Join the #ausmebiobank in advancing #MECFS and #longCOVID research.
If you're in QLD, NSW or VIC with these conditions, or a healthy volunteer, donate blood today.
Find out more 👉 zurl.co/kSU0r


#MECFSResearch #DonateForScience #MedicalResearch #ThankYouDonors

Trial By Error: Reporting on ME, ME/CFS, Long COVID, & so on... Ten years ago this month, I launched Trial By Error with a 15,000-word investigation of the fraudulent PACE trial, which tested cognitive behavior therapy and graded exercise therapy as curative treatments for what was then being chronic fatigue syndrome. What I thought was a one-off somehow morphed into an extended academic project on psycho-behavioral research across a broad range of conditions, including what is known as Long COVID. Amazingly, the pandemic and its consequences have rendered much of my earlier work relevant in a way I could never have anticipated. I had planned to end the project a couple of years ago, but decided to continue as I saw the same investigators I'd already criticized for their flawed research pursuing the exact same strategies in taking on Long COVID. This current crowdfunding will cover my work on Trial By Error and my position at Berkeley from January-June, 2026. Assuming it goes well, there will be one more crowdfunding campaign next spring to cover July-December, 2026. I plan to retire from Berkeley at the end of 2026. (I will be 70 on October 10, 2026.) I have been busy since last spring’s crowdfunding!!! *I’ve written dozens of posts on Virology Blog, many explaining why awful papers about psycho-behavioral interventions for ME/CFS and Long Covid are, in fact, awful. *I've covered news events and developments not only in the UK and US but also in multiple European countries as well as Australia, New Zealand, and Canada. *I've posted video interviews with Yale immunologist Akiko Iwasaki about the latest in Long COVID research, University of Edinburgh geneticist Chris Ponting about the DecodeME findings; Columbia University's Ian Lipkin about immune-related abnormalities in ME/CFS; the UK ME Association's Charles Shepherd about the UK government's pathetic plan for ME/CFS; and others.

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project/47768

#MEcfs #LongCovid #PwME

2/

"I speak not of true freedom from the prison cell, but more of a peeping through the bars. There is joy in this rediscovery, but there can also be grief. For it is perhaps only in glimpsing the world again that one truly knows the deprivation of being shut away from it."

#MEcfs #CFS #PwME

Glimpsing the World: My Joy and Pain Posted on 26th July 2019by Naomi Whittingham A rocky shoreline, with waves gently breaking on wet sandThere is an indescribable joy in experiencing the outside world after many months or years of incarceration. The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze. When darkness and isolation have been the foundation of life, these simple experiences are cherished. There can even be beauty in less obvious places: I have felt wonder on seeing things like traffic lights and motorway signs. To the housebound eye, these sights are the pulse of a living, active world. As such, my heart seizes them.

🧵
"Glimpsing the World: My Joy and Pain" (2019) by Naomi Whittingham @naomiwhitt.bsky.social , who has had #severeME for decades

alifehidden.com/2019/07/26/g...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

New Year, Trashing of Old Years … and Sheep’s Bum Holes Gepubliceerd op 24 Januari 2025 Trashing 2024 So there I was, merrily scrolling through Facebook on NYE enjoying people’s recaps about how their year had been, when I noticed a few posts about how ‘2024 can just do one’ (fuck off in other words) and ‘Bring on 2025!’ It’s nothing new. I see the same tossing of the old year out with the trash every NYE with statements about how rubbish it was, laced with bravado and hope for the year ahead. And I get it, I really do. Those who know me know I am no stranger to life dealing me some pretty shitty hands. (As in circumstances. I like to think my actual hands are quite nice. Ten fingers and all).

"New Year, Trashing of Old Years … and Sheep’s Bum Holes" by a mother with #severeME

meglobalchronicle.wordpress.com/2025/01/24/n...

One description I saw:
"a raw unfiltered commentary of feelings at another year gone by, however, acknowledgement we can’t know joy unless we know suffering"

#MEcfs

Long COVID After Acquisition of the Omicron Variant of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) During Pregnancy Compared With Outside of Pregnancy — Metz, Torri D. et al. "After propensity score matching, the adjusted long COVID prevalence estimates 6 months after index infection were 10.2% (95% CI, 6.2–14.3%) among those pregnant at infection and 10.6% (95% CI, 8.8–12.4%) among those not pregnant at infection."

Long COVID After Acquisition of the Omicron Variant of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) During Pregnancy Compared With Outside of Pregnancy

journals.lww.com/greenjournal...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective — Lillieberg et al. "A striking finding in the analysis were the fatigue experienced by the children and how severely it influenced the children." "The children in our study also reported a life strewn with impaired physical performance, leaving them unable to do what they had done before, and forcing them to face a new reality, namely an everyday life with the limitations that come with fatigue."

From Sweden:

Experiences of living with long COVID during childhood and adolescence: a qualitative study from the child’s perspective

bmcpediatr.biomedcentral.com/articles/10....

Screenshot from latest Science for ME weekly update

#LongCovid #LongCovidKids #LCKids #PASC

Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study — Bingyu Zhang et al. "In this study involving 465 717 individuals, we observed an increased risk of PASC across multiple organ systems after SARS-CoV-2 reinfection, reinforcing concerns about the long-term consequences of reinfection. These findings emphasise the ongoing risk of PASC with reinfection, regardless of severity, and suggest that the risk of PASC might be cumulative with each successive infection."

2/
Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study

www.thelancet.com/journals/lan...

Screenshot from latest Science for ME weekly update

#LongCovid #LongCovidKids #LCKids #PASC

Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients — Alain R. Thierry et al. "The plasma concentrations of circulating DNA, [myeloperoxidase] and [neutrophil elastase] are statistically much higher in patients with LC than in healthy patients (5.7‐, 3.5‐ and 14.9‐fold)."

Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in Long COVID Patients

onlinelibrary.wiley.com/doi/10.1002/...

Screenshot from latest Science for ME weekly update

#LongCovid #TeamClots #PASC @resiapretorius.bsky.social

2/

see also this post on the book she and her young son have been writing

#MEcfs #CFS

bsky.app/profile/tomk...

On an adventure with my little son Gepubliceerd op 29 maart 2024 The pain I feel at being able to spend so few moments with my eight-year-old son is almost impossible to express in words. Fortunately, the happiness of those brief moments when I actually see him is so great that it makes me feel complete for a while. He has just left. What a great time we had. Some adjusting in the beginning, because going from the busy world to mummy’s dark room where we have to whisper and play carefully on the bed is a big transition. But we always find our way. text continues below photo

"On an adventure with my little son".

Touching article where a woman with severe ME describes the precious time she spends with her young son:

meglobalchronicle.wordpress.com/2024/03/29/o...

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

1/

4/

bsky.app/profile/mecf...

Press release – ANZMES publishes critical guide to help doctors navigate ME/CFS research and avoid harmful treatments October 7, 2025 by anzmes01 7th October 2025 – For immediate release ANZMES, the leading National Advisory on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), has published a new resource for healthcare professionals, “A Guide to Navigating Research: Discerning Robust vs. Flawed Science.” This essential article, released in conjunction with a one-page toolkit, is designed to combat a history of misinformation that has led to inadequate care and often harmful treatments for ME/CFS patients.

Press release – ANZMES publishes critical guide to help doctors navigate ME/CFS research and avoid harmful treatments

anzmes.org.nz/press-releas...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Severely ill Dutch ME patient Dascha is laying 24/7 in the dark and can see her son Oscar only once in a while for a short time. Of course these are the highlights in her life, for each of which she has to pay the price. During those short visits they devised this story in their brief moments together: then they took turns fantasizing an episode of this adventure. In “Het Zwaard van de Woestijn” (The Sword of the Desert) Oscar and his friends Arthur and Otis end up on a magical flying carpet that takes them to the desert. There they have adventures with camels, robbers and a special sword. The booklet reflects the humor and ingenuity of childlike imagination and is suitable for children ages 7 and up. The booklet (currently only in Dutch) is beautifully illustrated by fellow sufferer Fennine, whose cartoons we may also include every issue of the ME Global Chronicle, such as here and here. 👉 It can be ordered by mailing your request to kinderboekje@12me.be, mentioning the number of booklets you would like to receive and your address. Dascha’s parents will handle your order. The price is €12,= per booklet, exclusive P&P. Proceeds are earmarked for ME research funded by the Open Medicine Foundation.

"A perfect gift for the holiday season" (for somebody who speaks Dutch)

meglobalchronicle.wordpress.com/2024/11/27/t...

Proceeds are earmarked for ME research funded by the Open Medicine Foundation @openmedf.bsky.social

#CVS #MECVS @mecfsskeptic.bsky.social @anilvanderzee.bsky.social

Great help. Thank you.

Motion - NNDM8884 - Welsh Parliament The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.

Tomorrow, Tue 7 Oct, the Welsh Senedd Business Committee will consider allocating 15 Oct to a Severe/Very Severe ME debate.
It has a good chance of being selected.
#pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion.
Find your
1/2
record.senedd.wales/Motion/8884

9/
"recovery stories, with their neat ending and promise of a way out of suffering, will always have more popular appeal than a harsh analysis of reality."

#chronicillness #ChronicallyIll