Sarah retweeted
COVID-19 can wake up dormant viruses in the body, large study confirms | Science | AAAS share.google/yLPLIwV5PMTooqS…
Sarah retweeted
This is one of the best articles on severe ME I’ve ever seen coming out of the UK. Thanks to @KatieFalkingham for her insightful and well-researched coverage.
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
“Had cold or flu symptoms in the last 7 days? Join the OUTPOST study in Melbourne or Sydney. Get free Rapid Antigen Tests, contribute to vital post-infection research, and earn up to $180 in vouchers.” #MECFS #LC
apprise.org.au/outcomes-post…
Sarah retweeted
A brief history of how ME/CFS ended up stigmatised and underfunded for decades. It wasn't an accident.
In 1970, two psychiatrists reviewed the case notes from the 1955 Royal Free Hospital outbreak in London and concluded it was mass hysteria. They didn't interview a single patient, but the idea that ME was psychological became the default view in medicine from then on.
In the UK, psychiatrists Simon Wessely, Michael Sharpe and Peter White developed this into the "illness beliefs" model, where a virus might trigger the illness but deconditioning and unhelpful beliefs keep people sick. They had huge influence over funding and policy, sitting on MRC panels and advising NICE and the DWP, and Sharpe and White also advised disability insurers. Much of the UK's ME research funding went into their trials, and their diagnostic criteria only required six months of fatigue, so the trials were full of people who didn't have ME.
The largest was PACE, which cost £5M and was published in 2011 as proof that CBT and graded exercise worked. It became the basis for NHS treatment. PACE had disingenuously loosened its recovery criteria partway through the trial, but still claimed success. A patient, Alem Matthees, took them to tribunal and got the data released in 2016. Under the original criteria, recovery fell from 22% to around 7%, and there was little change on objective measures like walking distance or return to work. CBT and graded exercise didn't work. NICE didn't remove graded exercise until 2021.
In the US, the CDC dismissed the 1984 Lake Tahoe outbreak, named the illness "chronic fatigue syndrome" in 1988, and the media called it "yuppie flu." In the late 90s, auditors found that of around $23M Congress gave the CDC for CFS research, about $13M had been quietly diverted to other programs and misreported. The NIH then spent roughly $ 5-6M a year on ME/CFS for decades, some of which also went to CBT, exercise and psychological research, and a chunk to university overheads, making it one of the lowest-funded diseases relative to how many people it affects. The CDC recommended CBT and graded exercise until 2017.
Most of Europe either followed the UK model or ignored the disease entirely. Germany did both, treating it as psychosomatic while barely funding research.
Long COVID has started to change this, because millions of previously healthy people developed the same illness at the same time and it became much harder to dismiss. Germany has now committed €500M over ten years, and biomedical research is consistently finding immune, neurological and autoantibody changes in ME/CFS patients.
All psychological intervention studies failed and when we finally started looking at physiological mechanisms, we have found hundreds of alterations. The psychiatrists responsible for the history of ME have millions of deaths on their hands and are largely to blame for the modern stigmatisation of patients. Thankfully that won’t continue much longer, I expect we will finally have breakthroughs in the next years now the shift is made.
Sarah retweeted
Symptoms are “horrible” and severe cases are a “living nightmare.”
George Monbiot speaks to Natasha Devon on LBC about ME/CFS, it’s long history of being dismissed and psychologised, and the role of governments and insurers.
“Thousands of Australians with ME/CFS underwent treatment based on the distorted data from the PACE trial and found their conditions worsened. Many went from moderate or mild forms of ME/CFS to be effectively bedridden” Jack the Insider, The Australian. #ME #MECFS #LongCovid ⬇️
George Monbiot’s column on “the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you”1/2 #MECFS
theguardian.com/commentisfre…
Sarah retweeted
New study finds reduced brain energy (ATP/PCr)🧠 in post-COVID condition, linked to mitochondrial dysfunction in the cingulate cortex — and associated with cognitive impairment.
#LongCOVID
pubmed.ncbi.nlm.nih.gov/4152…
Sarah retweeted
ABC Net: 'NDIS participants highlight mental toll of navigating 'complex' system'
'Mr Bretherton lives with a complex biological illness called myalgic encephalomyelitis (ME)....'
abc.net.au/news/2026-06-17/n…
Sarah retweeted
1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family.
The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians.
Sarah retweeted
A thread today about Immunoglobulin G (IgG) antibodies to various pathogens and why they seem to be elevated a lot in people with #LongCOVID, #MECFS, chronic #lyme/tick- and vector-borne illnesses and other complex chronic illnesses. First, let's start basic: what is IgG?
1/
Sarah retweeted
We're just about done with healthy volunteers but we still need a handful of people with pre-covid ME/CFS, and quite a few more people with Long COVID
This is for 1-200 people sized cohorts across multiple biological studies
Screening and contact form below👇(info not retained)
Still doing home visits for research into:
-platelet activation
-miRNAs
-cellular metabolism
-immune function
in pw/ ME/CFS or w/ Long COVID🩸🔬
If you're a woman with ME/CFS or Long COVID in VIC, Aus + want to be contacted, please fill in this form: redcap.latrobe.edu.au/redcap…
Sarah retweeted
Major Study Validates a Long COVID Autoimmune Subset (and an ME/CFS one) healthrising.org/blog/2026/0… #longCOVID #MECFS
Sarah retweeted
Full segment (9 mins):
youtu.be/HHzVXSVvi4o?si=AOju…
New BBC webpage on #MECFS
bbc.co.uk/articles/c3d2j8jd0…
Sarah retweeted
ME/CFS,
is one condition I strongly encourage you to put on your radar: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). ME/CFS is one of the most severe and neglected chronic diseases that is not rare. In its worst forms, patients are completely bedridden, unable to tolerate light, sound, or human interaction. Quality of life is among the lowest of any illness.
Despite all this, research funding has historically been extremely low relative to disease burden, largely due to long-standing mischaracterization and bias, including the fact that many patients are women.
ME/CFS sits at the intersection of immunology, neurology, and metabolism, involving complex multi-system dysfunction. This is exactly the kind of problem where AI can have an outsized impact by integrating complex data and uncovering hidden leads.
Please take a closer look. Your involvement could make an extraordinary difference to many millions affected globally.
Thank you 🙏
Sarah retweeted
Orthostatic intolerance is common in ME/CFS & Long COVID, yet many patients go undiagnosed for years.
Our latest blog explains:
• Tilt Table Tests
• Active Stand Tests
• NASA Lean Tests
…and why accessible testing matters.
Read more: bit.ly/49ZOOgw




















