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Sarah

@no1sarah.bsky.social

She/her. ♿️ 🏳️‍🌈🏳️‍⚧️ ally In healthier times: Health & social care; homelessness & housing. Music, music, music. 🎶 Mostly here to connect with #LongCovid #MECFS #ChronicIllness #Dysautonomia #hEDS #MCAS Kent, UK

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Dr Dean Burnett@drdeanburnett.bsky.social · 17h ago

*That* doc airs in 2 days, so here's another reminder of just how blatantly cynical the whole thing is, and we really should be treating it as such, rather than gifting @channel4tv.bsky.social unearned credibility by engaging in 'serious debate'

Dr Dean Burnett@drdeanburnett.bsky.social · 5d ago

Nothing says "legitimate concerns about children's wellbeing" than depriving a 10 year old child of medication prescribed by qualified professionals and broadcasting the results to millions of strangers. My critique of this whole debacle: theneuroscienceofeverydaylife.substack.com/p/some-quest...

Kelly@broadwaybabyto.bsky.social · 6d ago

Healthcare is suicide prevention. Housing is suicide prevention. Childcare is suicide prevention. Universal basic income is suicide prevention. When we ensure people have their basic needs met, mental health improves.

Lawerne@lawerne.bsky.social · last wk.

2d ago was Severe ME Awareness Day. Yesterday was, too. So is today. Tomorrow again, & the day after we’ll feel it with full force, cuz by then our friend PEM has our full attention. For us, every day is #SevereMEAwarenessDay. We're waiting. We're waiting for help. Every fucking day! #mecfs

Niko Suvisto@nikosuvisto.com · last wk.

Today is Severe ME Awareness Day. Every day since the 8th of June 2022 has been a severe ME day for me, a total of 1522 days so far without any end in sight. 1/7 #SevereMEAwarenessDay #MECFS #pwME #Photography

C.H. Romatowski@chromatowski.bsky.social · last wk.

Wish I knew what to say for Severe ME Day. It acknowledges the severe form of ME/CFS, a disease many people still have never heard of even as Covid explodes its prevalence: as many as 9M sufferers in the US alone, a quarter of whom are severely ill—so sick we cannot leave our homes or even our beds.

Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications

In this article, we update our earlier analyses of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) economic impact and its National Institutes of Health (NIH) funding versus disease b...

tandfonline.com

Katie@looktogod.bsky.social · last wk.

I live on the line between severe and very severe. My crashes take me to varying depths of very severe depending on how much I had to push, how much other health issues are acting up, & how well I can rest. Eventually, they go deep enough we can't pull back out of them.

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

#MECFS patients have a very low quality of life: lower than people with chronic renal failure, lower than heart failure, lower than any disease QOL to which it's been compared. So what is 'severe' ME? While there are many definitions, here is one from Montoya et al. (2021). 🧵 #SevereMEDay 🧪

Severity in ME/CFS - #MEAction logo in gold in upper right-hand corner, with www.meaction.net underneath. Content of slide says: MILD: Mobile and able to self-care. May be working or attending school, but often with accommodations and by reducing other domestic and social activities. MODERATE: Reduced mobility and restricted activities of daily living. Requires frequent rest periods and typically not working or attending school. SEVERE: Mostly homebound. Limited activities of daily living (e.g., self-care, showering, dressing). Severe cognitive difficulties. May require mobility devices VERY SEVERE: Bedbound. Unable to carry out most activities of daily living for themselves. Often extreme sensory sensitivity to light, sound, touch. May need total care. Cited: Montoya, J. G., Dowell, T. G., Mooney, A. E., Dimmock, M. E., & Chu, L. (2021). Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare, 9(10), 1331.
Camille Buckner@camillebuckner.bsky.social · last wk.

August 8th is #SevereMEDay. People with #SevereME face extreme medical neglect and suffer in darkness with no end in sight. Jaime and #MEAction Network are doing great work to raise awareness, educate, and promote research. Support them here: www.meaction.net #MEAwareness #MillionMissing ❤️‍🩹💔❤️‍🩹

#MEAction Network

Our movement fights for all people with ME/CFS and Long COVID to have access to compassionate and effective care. Join us!

meaction.net

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

Two diagrams from the Mayo Clinic Proceedings article I co-authored. On the left, a diagram of a woman's body, including symptoms of fatigue, muscle aches, PEM, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temp. dysregulation, urinary frequency, myalgia, sensory sensitivity/reactivity, swollen lymph nodes & other flu-like symptoms, shortness of breath, palpitations/chest pain, appetite changes and diarrhea/constipation. On the right, a wheel diagram of symptoms that may flare in post-exertional malaise, the pathology that occurs w/overexertion in which many symptoms flare and new symptoms may appear. It notes that PEM is not deconditioning, not being more tired than usual after activity, not second-day muscle soreness and symptoms are not necessarily relieved by sleep. It includes all the symptoms mentioned in the first diagram but has some sections on what it's like in the patient's own words.
It's ME(Jaime)@exceedhergrasp1.bsky.social · last wk.

Today is #SevereME day. Please take a look at and share the thread below: help teach people about severe ME.

It's ME(Jaime)@exceedhergrasp1.bsky.social · 2y ago

Today, Aug 8, is #SevereMEDay. Today we discuss severe-presenting #MECFS and remember people with severe ME. #MECFS is an infection-associated chronic illness, which means it is often, but not always, kicked off by an infection. ~Half of #LongCOVID cases at 6 mo meet the dx criteria for ME/CFS. 🧵

Two diagrams from the Mayo Clinic Proceedings article I co-authored. On the left, a diagram of a woman's body, including symptoms of fatigue, muscle aches, PEM, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, temp. dysregulation, urinary frequency, myalgia, sensory sensitivity/reactivity, swollen lymph nodes & other flu-like symptoms, shortness of breath, palpitations/chest pain, appetite changes and diarrhea/constipation. On the right, a wheel diagram of symptoms that may flare in post-exertional malaise, the pathology that occurs w/overexertion in which many symptoms flare and new symptoms may appear. It notes that PEM is not deconditioning, not being more tired than usual after activity, not second-day muscle soreness and symptoms are not necessarily relieved by sleep. It includes all the symptoms mentioned in the first diagram but has some sections on what it's like in the patient's own words.
Emma Monk@monkemma.bsky.social · last wk.

Do you want to hazard a guess at what this “jaw-dropping” list of freebies included? What luxuries asylum seekers might be being given “for free” in Thetford? Xboxes? Plasma TVs? iPhones? Ferraris? Let's take a look👀 🧵 1/22

Express headline: The jaw-dropping list of everything asylum seekers in Thetford were 'given for free'.
Sarah@no1sarah.bsky.social · last wk.

On #SevereMEDay, I'm sharing Kornelia Paulsen's 'ME - How It Can Shrink One's World, Bit by Bit' We need recognition of severe and very severe states of ME. We need training for health workers, timely diagnosis, and provision of safe, specialist health care. We need funding for research.

Cartoon-style illustration, containing 5 panels: 1: 'Before M.E: a house, a plane, a parry, a gym, a workplace, mountains and trees 2: 'Mild M.E: a concrete-looking pedestal with a house and workplace on top. Beneath, rocks with PEM written on them. 3. 'Moderate M.E' the pedestal has shrunk to contain only a house 4. 'Severe M.E' the pedestal now contains only a bed 5. 'Very Severe M.E' the entire panel is black. There is nothing except the title text.
Carole Bruce@cabruce.bsky.social · last wk.

#SevereMEDay Many are far too ill to post or look at posts, some friends have died, some of us use scarce energy to try to bring recognition to the millions of us missing from life. #ME can happen to anyone. We need URGENT action now to educate, care and fund research.

Bild
betsy ladyzhets 😷@betsyladyzhets.bsky.social · last wk.

Today @thesicktimes.org: In recognition of Severe ME Awareness Day, we republished excerpts from the new book What Is ME Like? focusing on Severe ME. Many thanks to the WIMEL team for allowing us to share their powerful work 🙏🏻 thesicktimes.org/2026/08/08/t...

“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ - The Sick Times

Essays focusing on Severe Myalgic Encephalomyelitis (ME), from a new book by an international group of writers documenting their ME experiences.

thesicktimes.org

Neurologist Mom@neurologistmom.bsky.social · last wk.

You are just one virus away from a life confined to a bed, living with unimaginable pain and symptoms you never imagined could exist. Nobody expects you to fully understand it unless you’ve lived it. But a little compassion can make a world of difference. #SevereMECFS

Tessa Munt MP 🔶@tessamunt.bsky.social · last wk.

Thanks to everyone who contributed to such a powerful account. @andyburnham.bsky.social spoke of govt investing in people’s success rather than paying for failure. A year on from #DecodeME results it’s time for serious investment in the research to address the cost to us all of #SevereME. #MECFS

Action for ME@actionforme.bsky.social · last wk.

Ahead of #SevereMEDay, we are launching the Severe ME Inquiry Report, exposing systemic failings in care, support and education for people with severe and very severe ME. Read today: www.actionforme.org.uk/the-more-ill... #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis #SevereME #VerySevereME

A white man lies in bed with ear defenders and an eye mask on. Behind him is a wheelchair and curtains pulled closed. Text overlay reads “Action for ME, 25% ME Group, Severe ME Inquiry Report. ‘The more ill you become, the less care you receive’. Major new #SevereMEDay report exposes systemic failures people with severe and very severe ME face, and calls for urgent action from Government, the NHS and public services.” Photo credit Lea Aring / German Association for ME/CFS.