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sarah boothby

@swastrosarah.bsky.social
2K followers 311 following 1.8K posts

Speaking up for everyone affected by severe/very severe ME/LongCovidME. #MEKills #MaeveInquest #pwME backstory: x.com/swastrosarah?lang=en-GB Justice4ME.uk ME is much more than chronic fatigue; it kills every year.

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Reposted by sarah boothby
Patient Safety Learning @patientsafetylearning.org · 13h
"The bereaved families fought for years to secure this Inquiry when many in Government wanted to move on, and they will continue pressing for accountability." A new blog by @profnaomifulop.bsky.social on the hub this month. www.pslhub.org/learn/corona...
pslhub.org
The PPE scandal has been exposed. Now we need accountability
Naomi Fulop argues that although the UK Covid-19 Inquiry has exposed serious systemic failures around the procurement of PPE, meaningful accountability remains largely absent
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Reposted by sarah boothby
Katy B @katybrc.bsky.social · 10h
Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them
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sarah boothby @swastrosarah.bsky.social · 7h
Thanks to @patientsafetylearning.org for a day of networking on AI in health and care. @precisionlife.bsky.social it may seem tangental to work on #ME/cfs but given your experiences with NHS, you may be in a position to improve patient safety for this cohort, based on clinical data being recorded.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 05/10/2026
Today @thesicktimes.org: @heatherhogan.bsky.social reviews a new comic book developed by children with Long COVID. "These superheroes showcase bravery by asking for help, resting, and being compassionate with themselves and others."
thesicktimes.org
Kids with Long COVID co-created their own superhero comic book - The Sick Times
Long Covid Superheroes showcases the bravery of asking for help, resting, and being compassionate with yourself and others.
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Anne @anneinayrshire.bsky.social · 05/10/2026
Trying to communicate with my GP surgery (again) to try to explain (again) why I cannot reliably manage phone calls and need email communication has put me in a PEM crash (again). The energy I had to use trying to explain it (again) in an email I sent 2 days ago has floored me. Absolutely hopeless
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Alem Matthees @alemmatthees.bsky.social · 05/10/2026
The approach to #LongCOVID has been ignore it until it goes away, preferring fantasy over reality. It has not gone away. This approach was applied to #MECFS for decades and it did not make anything go away except QoL, welfare/insurance costs, critical thinking, foresight to prevent trillions $ lost.
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
UK #ME/CFS Biobank Continues to Drive International Research Over the past six months, the UK ME/CFS Biobank has distributed more than 1,300 biological samples to research groups across the world, supporting a diverse range of studies aimed at improving our understanding of ME/CFS. Samples have been
us7.campaign-archive.com
https://us7.campaign-archive.com/?u=d5cd5b59c73011a4ce28bf62f
____ / ___M ]__ C{ ( o o )} { •• \___ ––––´ You probably found this page because one of our subscribers used Mailchimp to send you an email campaign and you traced a link in th...
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
have been shared with Dr Francisco Westermeier (Austria) to support further international collaboration.
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valebodi.bsky.social @valebodi.bsky.social · 05/10/2026
provided to Sophie Hicks at the UK Dementia Research Institute, University College London (UCL), Dr Sarah Annesley at La Trobe University, Melbourne, Australia, Dr Robert Baldock, Professor Kempuraj Duraisamy (USA), and Dr Dmitry Pzhezhetskiy(UEA). In addition, more than 100,000 clinical data points
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
You can read the paper (open access) here: www.sciencedirect.com/science/arti...
sciencedirect.com
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
But most of all, it is indebted to the ME community for everything it has done for me since I suddenly became bedbound with ME as a result of a COVID infection in 2022, including for directing me to the treatment that improved my health enough I was able to write this paper (from bed).
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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sarah boothby @swastrosarah.bsky.social · 05/10/2026
www.youtube.com/watch?v=fL4p... #pwME #LongCovidME highly recommend you save this presentation to your records. It is one of the most succinct descriptions of the disease process, packed with current international data, and full of promise based on almost 20 years of clinical experience. 🙏 Ron Davis
youtube.com
Carmen Scheibenbogen, MD, PhD, Charité University, Berlin
YouTube video by MECFS Collaborative Research Center at Stanford
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Call Me Cassandra @stitchingtwitcher.bsky.social · 04/10/2026
Yeah, just ignore patients and patient advocates, they clearly have an agenda (Why yes, yes we do have an agenda: to prevent harm from inappropriate treatments and to push for proper care)
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sarah boothby @swastrosarah.bsky.social · 05/10/2026
Official data shows autumn rises in Covid are a repeat pattern. ukhsa-dashboard.data.gov.uk/respiratory-...
ukhsa-dashboard.data.gov.uk
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Sammie McFarland @sammiemc.bsky.social · 05/10/2026
The current #COVID strain IS MORE transmissible. Please take steps to reduce risk of infection and transmission. Avoiding COVID is the only way to reduce risk of #LongCovid - which can be a result of any infection, of any level of severity. #Autumn 📷 @goodmorningbritain.bsky.social
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Beth Paint @craftymissb.bsky.social · 04/10/2026
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
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sarah boothby @swastrosarah.bsky.social · 04/10/2026
There is a lone swan on my stretch of the river. It keeps marking its territory and, whenever it sees me, coming back to my bows making eye contact and 'speaking', silently, with an open beak. Any suggestions on what it could be saying, and how to sex a swan, welcome 🙏🏼🙏🏼
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Colleen Steckel @colleensteckel.bsky.social · 04/10/2026
Exactly! "ME" organizations have been part of the problem. Watching the CFIDS Association of America get taken over by outsiders was my first wake up call to the truth about systemic bias being perpetuated on purpose. They became the Solve "ME" org who at one point helped our CDC push CBT and GET
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Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 04/10/2026
That’s — no words. 🫂
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Fandango @sherbert-lemon.bsky.social · 04/10/2026
I was undiagnosed for 15+ yrs, misdiagnosed as BPII, migraine neurologist insists exercise essential (despite seeing me degrade from walking fit to wheelchair user). Last time she referenced GET! Female, probably AuDHD, overweight (20+ years choc abuse for energy) - ME bound to be all in my mind!
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Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 04/10/2026
That’s my observation - ME IS very different from other illnesses and GPs can’t get their head around PEM
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Colleen Steckel @colleensteckel.bsky.social · 04/10/2026
My immune system crashing during P.E.N.E. has led to serious infections. I had been avoiding really bad crashes for many years then did the 2 day CPET. The afternoon after 2nd test my muscles and brain shut down in a way that was much much worse than my normal crash. This isn't "malaise".
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sarah boothby @swastrosarah.bsky.social · 04/10/2026
Meanwhile, @jenniejacques1.bsky.social (being female) knows too well how Physicians prefer to presume mental illness over severe physical disablement in her presentation. Hoping she will be well enough before too much longer to write about it. Her YouTube channel reveals a little on the topic.
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sarah boothby @swastrosarah.bsky.social · 04/10/2026
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
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Chronic Illness Humor @chronicillness.bsky.social · 02/10/2026
Artist: @ChronicallyMeh on Insta
illustration showing a person with long, dark curly hair wearing a pink shirt and blue pants lying completely flat on the floor, seemingly melted into a puddle.

A speech bubble from off-screen asks, "Are you ok?"

The person on the floor replies in a speech bubble, "This is my baseline". Near their head is a small watermark logo that reads "CHRONICALLY MEH".
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sarah boothby @swastrosarah.bsky.social · 03/10/2026
This is excellent news for UK science! He should be invited into government, nobody in the world knows more about viral reactivation and its implications for #LongCovid #ME
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sarah boothby @swastrosarah.bsky.social · 03/10/2026
lnkd.in/p/e-wuS5-A Bhupesh Prusty has been elected to the Royal Society of Biology 🥳🎊🎉🙌🏽👏🏽
lnkd.in
I am delighted and deeply honoured to share that I have been elected as a Fellow of the Royal Society of Biology (RSB), London. I am sincerely grateful to the Royal Society of Biology for this… | Bhup...
I am delighted and deeply honoured to share that I have been elected as a Fellow of the Royal Society of Biology (RSB), London. I am sincerely grateful to the Royal Society of Biology for this recogni...
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Patient Safety Learning @patientsafetylearning.org · 02/10/2026
💬Patient safety is sometimes described through policies, reporting systems and clinical processes. Those mechanisms matter, but safety is also shaped in ordinary human encounters.💬 Black maternal mental health is a patient safety issue - a blog by Sandra Igwe. www.pslhub.org/learn/patien...
pslhub.org
Black maternal mental health is a patient safety issue
Sandra Igwe draws on her own personal and professional experiences to illustrate why Black maternal mental health is a patient safety issue.
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Pam @pamboling.bsky.social · 02/10/2026
Does anyone with long COVID have the energy for orgasm?
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sarah boothby @swastrosarah.bsky.social · 02/10/2026
That a British GP can write to the Guardian, Oct 2026, claiming, "[NG206 is an important change] given the significance of post exertional malaise. But it does not establish that exercise is inherently dangerous or that all forms of physical rehabilitation are useless. Clinical trials have 1/3
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Niamh Goggin @niamh-smallchange.bsky.social · 02/10/2026
I've just read the whole report and the mind boggles. The lack of logic and sheer insanity of some of the academics' claims could lead one to believe that the psychological disturbance is on their side. Good job by the Commissioner and of course Alem Matthees. We owe you a lot, Alem.
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#MEAction Network @meactnet.bsky.social · 29/09/2026
MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS
Gold badge showing 20K clicks from Google Search for me-pedia.org in the last 28 days.
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sarah boothby @swastrosarah.bsky.social · 02/10/2026
The first question would have to be, who financed the Science Media Group then, and how were those funds raised? @davetuller1.bsky.social @alemmatthees.bsky.social
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Alem Matthees @alemmatthees.bsky.social · 02/10/2026
(3/3) This spin poisoned the well against critics of the #PACEtrial, so I had to address it in detail with the information tribunal that sided with my FOIA request. It was well received and they agreed the assessment of #MECFS activism in relation to the #PACEtrial was "grossly exaggerated" (p40).
informationrights.decisions.tribunals.gov.uk
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Alem Matthees @alemmatthees.bsky.social · 02/10/2026
(2/3) The Science Media Centre (UK) ran an organised campaign for "seizing the agenda", "frame the narrative", and "engineered the coverage" (p12). This resulted in numerous hyperbolic articles about alleged harrassment of #MECFS researchers which conflated it with valid criticism of the #PACEtrial.
web.archive.org
Wayback Machine
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sarah boothby @swastrosarah.bsky.social · 02/10/2026
All of this "gross exaggeration" was amplified by BBC Radio, the national state broadcaster. It was a propaganda campaign but in whose interest? This is the aspect I would like @georgemonbiot.bsky.social to use his journalistic privileges to explore. Who benefits from such a campaign, and how?
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sarah boothby @swastrosarah.bsky.social · 01/10/2026
'Monbiot then wrote about Professor Sharpe’s accusation-in the process learning about the entire debate, including the history of the fraudulent PACE trial' NB PACE Trial 'evidence' provided the basis NICE & NHS used to withdraw all drugs known to manage dysautonomia; symptomatic in #ME #LongCovidME
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David Tuller @davetuller1.bsky.social · 01/10/2026
Here's my interview with Guardian columnist @georgemonbiot.bsky.social about his recent column on the awful treatment of people with ME/CFS: virology.ws/2026/10/01/t...
virology.ws
Trial By Error: Interview with George Monbiot on Recent Guardian Column | Virology Blog
By David Tuller, DrPH As I mentioned last week, George Monbiot, the British investigative journalist and longtime contributor to The Guardian, published a c ...
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 01/10/2026
#MEAction Partner Caregivers Support Group invites caregivers who are spouses, partners etc of ppl with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - first Sunday of the month. 4 Oct @ 8pm BST Contact kim@caregiverwisdom.net tinyurl.com/mrydhna2
tinyurl.com
#MEAction Partner Caregiver Support Call | #MEAction
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...
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Patricia Donnellan, MPH 🇺🇦📎 @stpaulsbay.bsky.social · 01/10/2026
ME/CFS patients were prescribed GET and CBT on the belief they were just deconditioned and depressed. They said it made them worse. Medicine called them liars. The patients were right. Medicine was wrong. The patients were never the problem—the paradigm was. 👇 #NEISVoid (1/2) #MECFS #rs5522
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J. Offir, PhD @joffirphd.bsky.social · 29/09/2026
in the development of autoimmune conditions like lupus & multiple sclerosis, and chronic ME/CFS, as well as cancers. Folks wanting to know about EBV vax research can look here: pmc.ncbi.nlm.nih.gov/articles/PMC... and: www.nature.com/articles/s41...
pmc.ncbi.nlm.nih.gov
The case for an Epstein–Barr virus vaccine: Lessons from its link to systemic lupus erythematosus
Growing evidence has strengthened the longstanding hypothesis that Epstein–Barr virus (EBV) contributes directly to the development of systemic lupus erythematosus (SLE). While earlier work establishe...
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Patient Safety Learning @patientsafetylearning.org · 01/10/2026
💬The bereaved families fought for years to secure this Inquiry when many in Government wanted to move on, and they will continue pressing for accountability. 💬 A new blog by Naomi Fulop featured on the hub today. www.pslhub.org/learn/corona...
pslhub.org
The PPE scandal has been exposed. Now we need accountability
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Anna Wood @annakwood.bsky.social · 30/09/2026
🐦 THE CALL OF THE DUNNOCK🦋 Housebound and isolated one woman embarks on a journey to discover the wild creatures in her suburban garden and in doing so, finds new ways to connect to the world and to herself. #DVpit #NF nature/memoir
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Adam @abrokenbattery.bsky.social · 01/10/2026
Sad to hear of the death of Dame Esther Rantzen yesterday. After writing about her daughter’s ME in the 90s, she received 4,000 letters from distressed patients and their families. She described treatment resembling methods “used in mediaeval days to punish witches”.
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sarah boothby @swastrosarah.bsky.social · 30/09/2026
m.youtube.com/watch?v=XPZp... 2022 #MillionsMissing in Parliament Square UK. Not until 2027 will @england.nhs.uk be abolished. 5 years, many more deaths. (Most are not reported. Some recorded as CFS). Thanks as always to @alemmatthees.bsky.social mentioned just after half way in.
m.youtube.com
Sarah Boothby at #MillionsMissing London 2022
YouTube video by The ME Action Network
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Carole Bruce @cabruce.bsky.social · 30/09/2026
Strangely a heart/lungs consultant who was known by my GP to have an interest in ME. This was in ‘93.
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Steve Fifield @stevefifield.bsky.social · 30/09/2026
16:14
Taking a nap can help you
...
energetic, but take it in the
afternoon so that
it won't disturb your
sleep tonight.

Daytime Stress [Graph]
13 MIN AGO
Engaged
Your body is in an alert state. That energy can feel productive - but with Rest Mode on, this is a moment to shift the focus.
Instead of leaning into more output, aim for a balance that includes real pauses. Give yourself room to settle, even in small ways.

* Rest Mode is on
Heart rate
Today
Vitals
My Health
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Anna Wood @annakwood.bsky.social · 30/09/2026
🐦 THE CALL OF THE DUNNOCK🦋 A fox burying a chicken leg, a magpie’s iridescent feathers, kestrels displaying. The story of how one small brown bird led me to discover the wildlife in an urban Glasgow garden, while coming to terms with chronic illness. #DVpit #NF nature/memoir
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sarah boothby @swastrosarah.bsky.social · 30/09/2026
I support this campaign because nobody knows when hospital treatment may be needed, and nobody should be afraid to seek medical attention simply because NICE guidance is unclear and clinics do not understand how to manage risk. @england.nhs.uk refused to adopt the rduh clinical guidance x3 2022-2024
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