Paediatric Radiologist, Aotearoa New Zealand
Following more immunologists than radiologists
#MECFS #LongCOVID and a bit of #MacDev #iOSDev
he/him
https://ddp.nz | https://dysimmune.nz
📌 I've made a page for some key recent scientific papers for #MECFS and #LongCovid. Nearly all have accessible PDF links (open-access or via PubMedCentral).
Aiming to keep updated as new papers drop, but with limited numbers.
www.ddp.nz/me-cfs-lc/re...
"I think I saw four or five different specialists because the symptoms that I was having, they were across multiple [body] systems. All the specialists said 'this is ME' and we don't want it to be that because there's nothing out there for it."
#MECFS#LongCovidwww.bbc.com/sport/athlet...
"…18% of patients with coronary function testing-confirmed ANOCA meeting diagnostic criteria for #MECFS. Invasive cardiopulmonary exercise testing (iCPET) in patients with [both] reveals a primary peripheral, not cardiac, limitation to exercise."
#Cardiologyjournals.physiology.org/doi/10.1152/...
"While these findings are preliminary and the hypoxic challenge not equivalent to physical exertion, the experimental findings of our study support the concept of impaired neuro-metabolic and vascular adaptive capacity in ME/CFS."
#MECFS#MRI#neuroimagingwww.medrxiv.org/content/10.6...
…"long COVID and ME/CFS displayed higher proportions of type IIa/IIx fibers, and signs of intrinsic mitochondrial dysfunction, observations that were not seen following bed rest."
#MECFS#LongCovidwww.nature.com/articles/s41...
"As mitochondrial and endothelial dysfunction appear prominent in both long COVID and ME/CFS, with clear implications on oxygen extraction, future studies should aim to investigate the viability of improving patient mitochondrial and/or endothelial health to reduce patient burden."
📢 The WE&ME Foundation announces a biomedical research call for #MECFS 🔬🙋🏻♀️
• Indicative: ~7 projects funded, subject to quality
• Budget: EUR 120,000 to EUR 180,000 per project
• International applications
• Selection by international jury
👉 www.weandmecfs.org/weme-projects/
"This call explicitly welcomes applications from researchers new to the ME/CFS field, including those transitioning from related research areas."
Stage 1 short proposal deadline: 25 Aug 2026
Stage 2 full proposal deadline (by invitation): 10 Nov 2026
Expected funding decision: Dec 2026
WatchME for iPhone and Apple Watch
v2.10 now available
To help #pwME with daily pacing for #MECFS
iOS 17 | watchOS 10
Free. No data collected.
apps.apple.com/app/watchme/...#MEAwarenessDay
New in this version
- Improved widget updating on phone
- Improved complication updating on watch
- Added notifications on phone
- Added HRV graph
- Multiple interface improvements
- Performance improvements and bug fixes
- Added Trends screen (beta, enable via the Filter menu)
This is very welcome news.
It will extend the initial findings from DecodeME at the University of Edinburgh, led by Prof Chris Ponting @cgatist.bsky.social#MECFS#LongCovid
Great news from the UK🍾
£4.75 million to do whole-genome sequencing on 6000 DecodeME samples
www.thetimes.com/uk/healthcar...
(paywall)
Unfortunately it's not enough to analyse the full sample
People can find out more about SequenceME & donate here
megenetics.org.uk/our-projects...#MEcfs#PwME
1) 1) Interesting interview of Dr. Audrey Ryback by David Tuller. Her recent study showed that there are likely two age peaks for when people get ME/CFS.
It helps to characterise ME/CFS as a unique clinical entity.
WatchME v2.10 public beta
- To help with daily pacing: #MECFS#LongCovid#iOS 17+ | #watchOS 10+ | Free | No data collected
testflight.apple.com/join/PoR8lKli
New in this version
- Improved widget updating on phone
- Improved complication updating on watch
- Added notifications on phone
- Added HRV graph
- Multiple interface improvements
- Performance improvements and bug fixes
- Added Trends screen (beta, enable via the Filter menu)
A quote from my new piece, The Inventory of Loss.
“The grief is ongoing because the illness is ongoing, and new losses arrive as old ones calcify into something you have learned to carry.”
darthfoo.substack.com/p/the-invent...#LongCOVID#MECFS#PwME
Request for #LongCovid subjects for a research study
🙋🏻♀️💪🏼💉🩸
- Women aged 18+
- In #Melbourne#Victoria
- 1️⃣ blood sample & questionnaire
Looking for a signature in platelet microRNAs
Dr Sarah Annesley
Dr @danielmissailidis.bsky.social
La Trobe Uni
Entry survey
redcap.latrobe.edu.au/redcap/surve...
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#PwMEsubstack.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#radiologyonlinelibrary.wiley.com/doi/10.1002/...
🙋🏻♀️💪🏼💉🩸
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...
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#GDTcellswww.frontiersin.org/journals/imm...
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...
Nobody buries their successes.
Presumably IPC is still working on fabricating that "very careful narrative" that will let them back away from killing people without admitting they're currently killing people or facing accountability for all the people they've already killed.
This narrative:
"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."
#LongCovidonlinelibrary.wiley.com/doi/10.1111/...
"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."
“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
Science has named the seemingly unstoppable growth of renewable energy worldwide as the 2025 Breakthrough of the Year.
Learn more about this year's #BOTY and other big advances in science: https://scim.ag/493Tpgx
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...
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 🧵:
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. #ChronicIllnesssubstack.com/home/post/p-...
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.
Here’s a quote from my piece, Why I Can’t Just Meet You for Dinner, about post-exertional malaise. This is after work while I’m in the middle of a PEM crash. #PEM#MECFS#LongCovid#ChronicIllness#Disabledsubstack.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)
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...
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
I was laid off from Teen Vogue today along with multiple other staffers, and today is my last day.
certainly more to come from me when the dust has settled more, but to my knowledge, after today, there will be no politics staffers at Teen Vogue.
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...
"described for the first time widespread abnormalities in the function of unmyelinated C fibers, both somatosensory and sympathetic, that could represent a common pathophysiological mechanism explaining the multiplicity of symptoms in #longCOVID"
#MECFSonlinelibrary.wiley.com/doi/10.1002/...
WatchME for iPhone and Apple Watch
v2.8 now available
To help #pwME with daily pacing
iOS 17 | watchOS 10
Free. No data collected.
apps.apple.com/app/watchme/...
New in this release
- Heart rate zones display
- More monthly metrics, eg walking and stair speed, stability
- Interface improvements
- iOS 26 compatibility
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group
The process so far has been extremely progressive
I am hugely optimistic that a world-leading guideline will be produced
#pwME#MECFS
“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)