My good friend Tom Micklem who I first met back in university is running the London Marathon to raise money for Action for ME! @actionforme.bsky.social
You can read about it and donate here, good luck Tom!:
2026tcslondonmarathon.enthuse.com/pf/tom-micklem
A quote from my piece, The Debt Came Due.
“There is a version of my life that exists in my memory like a photograph from a trip I’ll never take again. In that version, I wake up and get out of bed without negotiating with my body first.”
#LongCOVID #MECFS #PEM #PwME
substack.com/home/post/p-...
I wrote about the findings from the inquiry about the impact of the pandemic on the NHS, and the mistakes of the first year.
I hope it makes you angry - it should make us all angry.
open.substack.com/pub/christin...
SARS-CoV-2 (COVID-19) is anything but a common cold.
Each infection can cause severe illness and even death in children at rates +++ higher than the common cold. It triggers long-covid (now the most common chronic illness in children) and other cobditions like diabetes.
Not the common cold.
Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes.
academic.oup.com/ooim/advance...
1/
team credits to follow
"findings reveal widespread alterations in multiple NII- derived metrics across white matter fibres, suggesting complex inflammatory processes affecting white matter microstructure in ME/CFS patients."
#MECFS #MRI #neuroimaging #radiology
onlinelibrary.wiley.com/doi/10.1002/...
Flyer from La Trobe University with a prominent red background. Looking for Long COVID patients Have you had a COVID-19 infection and are suffering from unexplained fatigue, respiratory issues, brain fog or muscle pain 3+ months post infection? Are your symptoms worse after exertion? You may be suffering Long COVID. We would love to hear from you! If you live in Victoria and would be willing to donate a blood sample, please contact Dr Sarah Annesley at s.annesley@latrobe.edu.au or Prof Stephanie Gras at s.gras@latrobe.edu.au
🙋🏻♀️💪🏼💉🩸
Request for subjects for a research study
- Women aged 18+
- In #Melbourne #Victoria
- With #LongCovid & #MECFS
Looking for a signature in blood platelet microRNAs
One blood sample & questionnaire
Study being run by
- Dr Sarah Annesley
- Dr Daniel Missailidis @danielmissailidis.bsky.social
The proteome (>7,000 circulating proteins) in people with ME/CFS exhibits immune system, vascular and metabolic dysregulation compared with controls
(and likely homologous in #LongCovid)
www.cell.com/cell-reports...
Long COVID, ME/CFS, and other post-infectious diseases pose new questions for medicine and society. With the long-term data from the NAKO Health Study, Germany now aims to systematically clarify why some infections leave lasting effects and how those affected can be better supported. Post-infectious diseases are on the rise. Infections such as COVID-19 can lead to chronic conditions such as Long COVID or ME/CFS months or even years later, affecting hundreds of thousands of people in Germany. As part of the National Decade Against Post-Infectious Diseases, the Federal Ministry of Research, Technology, and Space (BMFTR) is investing approximately 500 million euros over the next decade to systematically research causes, disease mechanisms, diagnostics, and therapies and to improve care. The NAKO Health Study, with 200,000 participants, provides crucial long-term data and enables a rare before-and-after comparison with data and biosamples from before, during, and after infection. The aim of research is to determine the actual prevalence of post-infectious diseases more accurately, to better understand the underlying biological processes, and to effectively support those affected through targeted interventions in the future.
Exciting to read about some of the expensive ME/CFS & long Covid research planned in Germany (using some of€500 million budget) including that using long-term samples which allow comparisons of samples before and after developing the conditions
www.helmholtz.de/en/newsroom/...
#LongCovid #MEcfs
"… revealing widespread transcriptional remodeling across both innate and adaptive immune compartments."
"Mechanistically, we identify Galectin-9–TIM-3 interaction as a potential pathway driving ɣ𝛿 and MAIT cell depletion in LC."
#MECFS #LongCovid #GDTcells
www.frontiersin.org/journals/imm...
To understand the catastrophic turn in U.S. health policy, follow the money paulkrugman.substack.com/p/how-the-ka...
Huh.
It's almost as if betting the world on a game of "let's pretend" between a bunch of pseudoscientific cosplayers wasn't a great public health strategy for dealing with COVID after all. 🤔
It must be nothing though. I'm sure we could trust management-class MDs to tell us if they got it wrong...
"We found that plasma concentrations of MASP-2/C1Inh were significantly higher in patients with long COVID relative to healthy convalescent individuals, indicating sustained activation of the lectin complement pathway."
#LongCovid
onlinelibrary.wiley.com/doi/10.1111/...
Eminence-based medicine ;-)
"we identified that PC(O-38:4) had significantly reduced levels in ME/CFS LCLs and was almost entirely discriminative of ME/CFS status"
#MECFS generated lymphoblastoid cell lines "show accumulation of lipids, skewed lipid profiles and altered activity of related metabolic enzymes such as PTDSS1."
Multi-omics identifies lipid accumulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cell lines: a case-control study
@danielmissailidis.bsky.social et al.
#MECFS
link.springer.com/article/10.1...
“This year, renewables surpassed coal as a source of electricity worldwide, and solar and wind energy grew fast enough to cover the entire increase in global electricity use from January to June according to energy think tank Ember“
@science.org’s Breakthrough of the Year is the growth of renewables
@davetuller1.bsky.social has also written on this at
virology.ws/2025/12/11/t...
and
virology.ws/2025/12/16/t...
More evidence-based disease mechanisms = less #stigma for Long COVID patients! 👇👇👇👇
Human #genetics implicate thromboembolism in the pathogenesis of #LongCOVID in individuals of European ancestry.
www.nature.com/articles/s44...
BOLD signal changes can oppose oxygen metabolism across the human cortex, Nature Neuroscience
fMRI signals “up,” but neural metabolism might be going “down.”
In our @natneuro.nature.com paper, we demonstrate that about 40% of voxels with robust BOLD responses exhibit opposite oxygen metabolism, revealing two distinct hemodynamic modes.
rdcu.be/eUPO8
funds @erc.europa.eu
#neuroskyence 🧵:
![Published on: 9 December 2025
In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research
Todd E. Davenport, Professor & Chair University of the Pacific, Workwell Foundation
Other Contributors:
Staci R. Stevens, Exercise Physiologist
Mark A. Faghy, Professor
Jessica DeMars, Respiratory Physiotherapist
J. Mark Van Ness, Professor & Chair
Respect for persons, beneficence, and justice are bedrock ethical principles in science. They are especially important when studying vulnerable populations. Billias et al. argue that deception is necessary to assure the internal validity of their exercise study involving people living with long COVID.[1] Here, we assert the use of deception is ethically indefensible and scientifically unnecessary in this population. It undermines informed consent, increases risks for harms, exploits the vulnerability of participants, and erodes trust in science and health care, all while exploring a question that already has been asked and answered satisfactorily enough to inform clinical recommendations.
Physical activity is a common trigger for post-exertional malaise (PEM),[2 3] which is common in people living with long COVID.[4] PEM involves an impaired recovery response from exertion that is distinct from deconditioning.[5 6] The hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is PEM. Exercise is no longer recommended in contemporary clinical guidance for ME/CFS, because an accumulation of evidence from research and lived experience suggests it is likely to cause avoidable harms.[7] Exercise prescription without adequate safeguards for PEM even may be considered negligent practice. The protocol acknowledges people living with PEM often worsen with exercise dosages that may be appropriate for other conditions.[1] Several of the authors of this protocol also previously published a systematic review acknowledging risks of exercise in people with long COVID related to PEM.[8] However, the author…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreidl77x7uweergov5gcuvlzqo7ehnvalbag3u44hniwvoh5uuc2ccy)
Published on: 9 December 2025 In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research Todd E. Davenport, Professor & Chair University of the Pacific, Workwell Foundation Other Contributors: Staci R. Stevens, Exercise Physiologist Mark A. Faghy, Professor Jessica DeMars, Respiratory Physiotherapist J. Mark Van Ness, Professor & Chair Respect for persons, beneficence, and justice are bedrock ethical principles in science. They are especially important when studying vulnerable populations. Billias et al. argue that deception is necessary to assure the internal validity of their exercise study involving people living with long COVID.[1] Here, we assert the use of deception is ethically indefensible and scientifically unnecessary in this population. It undermines informed consent, increases risks for harms, exploits the vulnerability of participants, and erodes trust in science and health care, all while exploring a question that already has been asked and answered satisfactorily enough to inform clinical recommendations. Physical activity is a common trigger for post-exertional malaise (PEM),[2 3] which is common in people living with long COVID.[4] PEM involves an impaired recovery response from exertion that is distinct from deconditioning.[5 6] The hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is PEM. Exercise is no longer recommended in contemporary clinical guidance for ME/CFS, because an accumulation of evidence from research and lived experience suggests it is likely to cause avoidable harms.[7] Exercise prescription without adequate safeguards for PEM even may be considered negligent practice. The protocol acknowledges people living with PEM often worsen with exercise dosages that may be appropriate for other conditions.[1] Several of the authors of this protocol also previously published a systematic review acknowledging risks of exercise in people with long COVID related to PEM.[8] However, the author…
Well done & thanks to these healthcare professionals (PTs)/similar ( @sunsopeningband.bsky.social @profmarkfaghy.bsky.social et al) for this new e-letter 👏
"In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research"
bmjopen.bmj.com/content/15/1...
#LongCOVID #PEM
I’m excited to share my latest work, “The Small Life.” It explores the little things that still bring me joy as I navigate #LongCovid and #MECFS. #ChronicIllness
substack.com/home/post/p-...
"The brutal truth is this: living with PEM means making impossible choices every single day. Work or social life. Basic functioning or relationships. Today’s activity or tomorrow’s capacity."
-- Fred Rossi (@darthfoo.bsky.social)
This blog post is a very accurate characterisation of the experience of living with #PostExertionalMalaise #PEM.
Recommended reading for healthcare professionals who want to understand #MECFS and #LongCovid.
You generally only see these patients when they're at their best — not in the aftermath.
I never met Alice Wong in person, but like so many great writers I felt like I knew her - and unlike many, when I emailed she emailed right back. ❤️
Peds neurologist @dianacejasmd.bsky.social has a beautiful essay in Wong's Disability Visibility collection - I recommend it to physicians. #neurosky
After some hardcore protesting in Germany!! Well done‼️‼️🇩🇪🇩🇪
"The coalition plans to invest 500 million euros by 2036 in the fight against #LongCovid and chronic fatigue syndrome (#MECFS)."
www.spiegel.de/politik/karl...
I am recruiting for a couple of studies but chiefly doing this via one study recently funded by ME Research UK (grant held by Dr. Sarah Annesley). Looking for females only, residing in VIC, Australia only due to short sample lifespan (part of this work is various experiments being done on platelets). Information doc provided below. We only require a few short-form survey items and one combined blood draw to get what we need for these studies. If anybody has questions or needs help parsing the info or accessing the documents, filling out anything, etc, email me at D.Missailidis@latrobe.edu.au and we'll see what we can do to accommodate your requirements to allow to you participate. (I will not reliably see or respond to replies on s4me) Link to initial onboarding materials, it should all be self-contained and explanatory from the "START HERE (instructions)" document.: https://drive.google.com/drive/folders/1y_mZjdQMUlCOJobve2adryxbkkNaNQtS
From Daniel Missailidis, PhD @danielmissailidis.bsky.social
(Victoria, Australia)
People with ME/CFS, Long Covid, and healthy volunteers sought
drive.google.com/drive/folder...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
WTAF.
This is an absolute travesty. Teen Vogue has consistently been a light in the dark and once again the corporate overlords just end it all.
Long Covid Is Real — And It’s Changing an Entire Generation
Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e
Feature: www.rollingstone.com/culture/cult...