iiinova — where your digital self keeps evolving

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 15/02/2025

And no, contrary to many ableds’ imaginings, becoming disabled won’t make you suddenly decide you’d be better off dead. You’ll realize you’re still you & your life is still your life & you’ll wish really badly that society didn’t devalue disabled lives & make it so freaking hard for us to survive

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ez @elinz.bsky.social · 10/02/2025

Godmorgon! Hur ser din kaffe- eller temugg ut?

Kaffekopp med hattifnattarna som fikar som motiv. Kaffekoppen står på ett täcke. Bakom koppen syns del av en suddig vilande katt.

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Chris Wexler @chriswexler.bsky.social · 11/12/2024

Hey #MECFS and #LongCovid community. We have a patient here in Minnesota that is suffering from temporary paralysis after a bad MCAS reaction to new medication. Has anyone else heard of this? The doctors are stumped. Need the communities help!

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Naomi Harvey PhD @naomidharvey.bsky.social · 17/11/2024

“Using the term “long COVID” whilst failing to identify subdiagnoses and specifying which groups are being discussed, is confusing & actively harmful both in scientific research and in a wider context.” www.healthrising.org/blog/2023/05...

healthrising.org

The Problematic Language of Long COVID and ME and Why it Matters - Health Rising

Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS wo...

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The ME Inquiry Report @themeinquiryreport.bsky.social · 22/11/2024

Okej. Jag inser att det kanske är en bra grej med nån slags presentation om jag nu ska ge Bluesky en ärlig chans. Gör ett försök. Here we go.

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ez @elinz.bsky.social · 16/11/2024

This is worth reiterating! "Failure to appropriately diagnose ME/CFS amongst those with long COVID is detrimental to those suffering from it, as well as those with non-COVID ME/CFS and the general public." #pwME #MECFS #LongCovid #LCME www.healthrising.org/blog/2023/05...

healthrising.org

The Problematic Language of Long COVID and ME and Why it Matters - Health Rising

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ez @elinz.bsky.social · 30/09/2023

Hello all! 🧡 An introduction. I'm interested in science, chronic illness, medicine, disability, and the history of ME/CFS. I sometimes study history of ideas, amongst other things, at Stockholm University. Other interests are houseplants, board games, yoga, photography. #pwME #MECFS

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155 cm jordnötssmör och ångest @funkisfeministen.bsky.social · 11/11/2024

Jag har en fråga till vårdpersonal. Bakgrunden är följande: SFAM (Svensk förening för allmänmedicin) har i sin tidskrift publicerat en slags opinionsartikel som går rakt emot forskningsläget. Den bygger på en annan opinionsartikel som är skriven av lobbygruppen Oslokonsortiet. (1/?)

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/10/2023

"In the event of PEM, patients should be urged to reduce their activity and to decrease exacerbating sensory stimuli. Patients with ME/CFS should rest to recover rather than pushing through exacerbated symptoms." -- Grach et al., 2023. www.mayoclinicproceedings.org/action/showP...

mayoclinicproceedings.org

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Chris Ponting @cgatist.bsky.social · 24/10/2024

ME/CFS genetics postdoc post available at the Medical University of Vienna. The position is either full-time for 9 months or part-time for 12 months, with a start date in Q1 2025. Initial term, with possibility of extension. www.linkedin.com/jobs/view/40...

linkedin.com

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George Monbiot @georgemonbiot.bsky.social · 18/10/2024

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

theguardian.com

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot

Chronic fatigue syndrome is as physiological as a broken leg. We must learn all we can from this tragic case, says Guardian columnist George Monbiot

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/06/2024

Hey, #NEISvoid! If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space. Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply. And share! Let's keep this post circulating as a way to reconnect.

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155 cm jordnötssmör och ångest @funkisfeministen.bsky.social · 04/06/2024

Jag är i desperat jakt på en privatläkare som kan skriva ut LDN i Sthlm. Jag kan betala men absolut inte åka runt. Jag behöver vanligtvis hembesök och kan som undantag åka liggandes på bår i bil ett fåtal gånger på år. Tips mottages gärna på privatläkare som kan förskriva i Sthlm eller på distans.

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ez @elinz.bsky.social · 04/03/2024

Was reminded of an obsession from a few years ago. Had over 30 kinds of Coleus at home. They're beautiful. But when the interest faded I got tired of the vermin they always attracted. Picture of my favourite kind. Isn't it pretty! Please share pics of any beautiful plants you have! 💜❤️💛💚

Coleus plant "Dreams Onegin". Sun lit leaves with mixed colours; red, yellow, green and brown-purple(?).

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#MillionsMissing Sweden @millionsmissingswe.bsky.social · 26/04/2024

Den 12 maj är internationella ME-dagen! Vi uppmärksammar det med en #MillionsMissing- manifestation på Sergels torg i Stockholm mellan kl. 12–15. Vi ställer hundratals par tomma skor med berättelser från ME-sjuka. #MillionsMissingSweden #pwME #svmed #MEcfs www.facebook.com/events/11681...

facebook.com

MillionsMissing Stockholm 2024

Event in Stockholm, Sweden by MillionsMissing Sweden on Sunday, May 12 2024

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155 cm jordnötssmör och ångest @funkisfeministen.bsky.social · 02/04/2024

Världsautismdagen idag. Jag önskar att jag en dag ska ses som en autist som är en fullvärdig människa, i stället för den sämre version av en icke-autist som jag behandlas som idag. (1/?)

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ez @elinz.bsky.social · 16/03/2024

Long Covid is a useful and important name and diagnostic code! As important are subgroups that LC patients might fulfill criteria for. The fact that it is possible to get severe post-infectious syndromes from other viruses, like the flu, does NOT mean that the term #LongCovid is redundant.

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ez @elinz.bsky.social · 10/03/2024

Är besviken på att svenska forskare och media ignorerar att ca 50% av de med postcovid har ME/CFS. Blir lika ledsen för varje artikel. Artiklar som i övrigt är bra och med experter som borde veta bättre. Jag hoppas på kunskapsspridning. Det sker inte genom att ignorera ME. #MECFS #pwME #svmed

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ez @elinz.bsky.social · 05/03/2024

Ignored my heart rate being 120 bpm while cooking a meal from scratch yesterday. I knew I shouldn't have. The rest of the evening was ruined (except happy for nice food). And I'm still paying the price today, with PEM. I love cooking, but regret failing at my otherwise good pacing. #MECFS #pwME

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ez @elinz.bsky.social · 04/03/2024

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#MillionsMissing Sweden @millionsmissingswe.bsky.social · 28/02/2024

"Patientgruppen har blivit sviken." "Det finns mycket forskning som börjar komma, använd det, hitta bra läkare och skapa specialistcenter i alla våra sjukvårdsregioner åtminstone." /Jenny Lundgren, ordförande Riksförbundet för ME-patienter (RME). #svmed #MEcfs sverigesradio.se/artikel/svar...

sverigesradio.se

Svårare att få tag på medicin – efter att specialistklinik stängt - Studio Ett

Patienter som lider av den ovanliga neurologiska sjukdomen ME-CFS blir ofta helt sängliggande.Vid årsskiftet stängde en stor specialistklinik med patienter ...

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ez @elinz.bsky.social · 05/02/2024

Notes from a sickbed by Tessa Brunton @tessabrunton.bsky.social The main character is often resting surrounded by cats and a vivid imagination, with an undiagnosed illness later identified as ME/CFS. I appreciate the realness, dark humor, and the power of having creativity keeping you company.

Book cover. Drawing of person in a bed frowning. Lots of detail around the bed. Through the window you can see people walking down the street.

Text: Notes from a sickbed. Tessa Brunton.

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#MillionsMissing Sweden @millionsmissingswe.bsky.social · 27/01/2024

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review Nu över 10 000 underskrifter! Har du skrivit under än? This important petition has reached over 10,000 signatures! change.org/p/cochrane-w... #MEcfs #pwME #MillionsMissing #svmed

change.org

Sign the Petition

This petition has been posted on behalf of the committee of the international Science for ME forum: People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane R...

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ez @elinz.bsky.social · 31/12/2023

✨️ Happy New Year! ✨️

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Tom Kindlon @tomkindlon.bsky.social · 25/12/2023

Do you have ME/CFS? Are you able to travel to Palo Alto, CA for 2 separate visits? If so, please consider taking part in this. Please also highlight to others. #MEcfs #CFS #PwME

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Tom Kindlon @tomkindlon.bsky.social · 29/11/2023

In May 2023, the ME Association requested the latest mortality data from the Office for National Statistics (ONS) & discovered that between 2001 and 2021,150 deaths in England & Wales were partly or fully attributable to ME/ #CFS. Discussion on mortality: meassociation.org.uk/2023/11/me-a... #MEcfs

meassociation.org.uk

ME Association Research Review: Mortality in ME/CFS - The ME Association

Malnutrition is the most serious life-threatening complication in those with ME/CFS, especially in very severe cases.

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155 cm jordnötssmör och ångest @funkisfeministen.bsky.social · 16/11/2023

Precis och jag tänker att det blir omöjligt att ge bra vård så länge PEM är ett tabu. Här har media ett ansvar att sluta med att hela tiden återskapa tabut.

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ez @elinz.bsky.social · 13/11/2023

People can have Long Covid and POTS, MCAS, diabetes, MS, etc. They can also have Long Covid and ME/CFS. Not identifying subgroups within Long Covid dilutes research studies. Not identifying and counting ME/CFS perpetuates stigma. It hurts science and patients. #MECFS #LongCovid

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ez @elinz.bsky.social · 13/11/2023

We shouldn't deny those who fulfil ME/CFS criteria a diagnosis of ME/CFS. Denying that ME/CFS can be triggered by SARS-CoV-2 is counterproductive for the patient, for research, for health care knowledge, and for society. #MECFS #pwME #svmed #LCME #LongCovid #Science

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ez @elinz.bsky.social · 13/11/2023

ME triggered by anything after 2020 will probably fulfil LC criteria. If we stop diagnosing ME in people who might have had Covid-19, then ME will cease to exist officially. If we deny ME/CFS, we lose a crucial tool with connection to history and previous science. #MECFS #LCME

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ez @elinz.bsky.social · 13/11/2023

Long Covid criteria points to a very broad group of illnesses and pathology. ME after covid (LCME) will be a more defined subgroup within the LC group. It will also be a more defined subgroup within the ME group. It's not a matter of either/or. It's a matter of both, and more! #MECFS #LCME

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 09/11/2023

Happy to have these poems out in the world alongside so many pieces that are making me nod & sigh in recognition & solidarity. Thank you Long Hauler Publishing for bringing our voices together!🙏🏻💙 The Long Covid Reader is now for sale at @greenapplebooks.bsky.social & the big river place! 😘

A book cover with a black background and colorful, smoky clouds forming a person’s head & face. The text reads:

Writing and Poetry from 45 Long Haulers
The Long Covid Reader
Edited by Mary Ladd, et al.

Heartsink
Emily Fraser

They call us the heartsink patients
because we don’t get better
but we don’t die either.
We just keep coming back,
making them lose confidence
until they can’t take it anymore —
and then they refer us to Psych.

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ME/CFS News @mecfsnews.bsky.social · 03/11/2023

ME/CFS patients tend to arrive exhausted in the doctor's office and in this state cannot think or communicate properly, stand up for themselves, or explain the illness to another person. They arrive in an especially vulnerable state. I believe this contributes to how misunderstood the illness is.

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ez @elinz.bsky.social · 01/11/2023

Finally got around to reading Paula Knight's graphic novel The Facts of Life (2017). It is beautiful and down to earth, at the same time as tackling big questions of love and family. The main character has ME/CFS. @paulaknight.bsky.social #pwME #MECFS

Book cover:
(Illustration of two people facing each other.)
The Facts of Life
Paula Knight

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ME/CFS News @mecfsnews.bsky.social · 01/11/2023

DecodeME study needs more participants with ME/CFS in the UK. The more, the better. The recruitment will end in two weeks. If you have been sent a spit kit but did not return it, please return it now. Sign up here www.decodeme.org.uk/portal/

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Tom Kindlon @tomkindlon.bsky.social · 27/10/2023

Sadly Michael posted this on Oct 22 after a similar Covid study came out: "I've been recruiting for this same study in ME patients since before the pandemic, but people are not volunteering." Please highlight widely 🙏 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

Study recruiting flyer with the headline “Brain Scan Study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Help us understand if ME/CFS is related to inflammation in the brain. The flyer explains that this study is located at the MAssachusetts General Hospital’s Martinos Center for Biomedical Imaging in Charlestown, MA, with up to 8 hours total of required participation and up to $250 in pay. Participants will provide blood and saliva samples, wear a device while sleeping, answer questions about their health and history, and complete a 1.5-hour PET-MR scanning session. During the scanning session, participants will receive an injection as blood is taken from an arterial catheter in your arm. Some parts of the study may be conducted remotely. This is a study designed to test a specific hypothesis about the cause of ME/CFS. It is not a treatment study.

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ez @elinz.bsky.social · 28/10/2023

Exercise is not a cure for ME/CFS. Positive thinking is not a cure for ME/CFS. NICE guidelines advise against the Lightning Process. It's pseudoscience. "Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS." Source: www.nice.org.uk/guidance/ng206 #MECFS #pwME

nice.org.uk

Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and man...

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Lia Pas @liapas.bsky.social · 19/10/2023

#WIPWednesday • I’ve mostly finished the brain and am using single strand #embroidery floss for the details. I need to decide on stitches for the very complex face area soon. #VagusNerve #SciArt 🐡🧪🩺🧶

An embroidery of a head and neck stitched in blue thread on sulky material over green cloth. The brain is stitched in back stitch and the vagus nerves in the neck are stitched in chain stitch. The facial nerves haven’t been stitched yet. A needle minder in the shape of an hourglass that reads, "This is taking forever," sits near the stitches holding a needle.

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ez @elinz.bsky.social · 19/10/2023

All research studies including ME/CFS and LongCovid patients should identify how many in the LongCovid group fulfill criteria for ME/CFS. This is basics. These two groups are overlapping circles. It's essential to know where they overlap. #MECFS #LongCovid

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