#ME/CFS is an active hashtag on Bluesky. In the last 30 days, 64 people shared 205 posts with it — around 7 a day. Activity is up 38% versus the previous week, peaking on Sep 21 with 18 posts.

Posts with #ME/CFS

George Monbiot

@georgemonbiot.bsky.social

1 day ago

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS

George Monbiot @georgemonbiot.bsky.social

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

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George Monbiot

@georgemonbiot.bsky.social

1 day ago

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George Monbiot

@georgemonbiot.bsky.social

about 10 hours ago

Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2

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Tania J. Spencer

@taniaspencer.bsky.social

5 months ago

1/ People living with #LongCOVID & #ME/CFS, don't give up 👇 "A woman who lived with three life-threatening autoimmune diseases for more than a decade has returned to a near-normal life after a cell therapy reset her wayward immune system": www.theguardian.com/scien….

www.theguardian.com

Woman with three deadly diseases has ‘remarkable’ recovery after cell therapy

Treatment reset wayward immune system of patient with life-threatening conditions, say scientists, in a world first

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@valebodi.bsky.social

4 months ago

“If there's disturbance in the vascular system, disturbance in the immune system, disturbance in the cell energy function, that would explain why people [with #ME/CFS] have hundreds of symptoms," "Because every tissue and organ in the body is impacted by this illness." www.cell.com/cell-reports...

www.abc.net.au

Extreme fatigue illness linked with changes to immune cells: study

Ella Engel saw many specialists before she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome. Her blood may help researchers understand the condition.

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Pina

@pinam.bsky.social

7 days ago

ACHTUNG❗️ Während FRANKREICH auf Wissenschaft setzt, zementiert D die überholten Meinungen fragwürdiger Experten. Das französische Gesundheitssystem und die nationale Krankenkasse stufen #ME/CFS als körperliche bzw. neurologisch - systemische Erkrankung und nicht als psychische Störung ein!

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Jayne Zbrainzzzzz

@jaynetunes.bsky.social

over 1 year ago

#chronicillness is keeping me from protesting in person today. Please, if you have the health and resources, go out and show this regime that most of us care deeply about things like “innocent until proven guilty” and “health care” and “education.” Oh and “voting rights.” #me/cfs #handsoff

A little blue penguin plushy attends a demonstration on April 5 in Santa Cruz, California. The penguin is holding a sign that says no emperors, and shows a picture of an emperor penguin with orange hair added on, with the red circle and line through the image. In the background are thousands of protesters with signs standing on a lawn on a sunny spring day. There may or may not be a human holding the plushy.

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Astronomer Royal for Scotland | Catherine Heymans

@astroroyalscot.bsky.social

6 months ago

It's #LongCovidAwarenessDay & co-incidentally my 4th anniversary of #LivingWithLongCovid. Good news: every month I get that little bit better. I am the Queen of pacing! Bad news: there is no cure, no treatment, just patience. Sending love & spoons to all my fellow #ME/CFS #LC friends today.

Catherine smiling in sunspecs in front of a large ferris wheel (the London eye).

A wall of hearts: the uk covid memorial.

A view along the river Thames with a wall of hearts on the right: the UK covid memorial

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DrChronically M.D.

@drchronically.bsky.social

5 months ago

Es ist beeindruckend, was @liegenddemo.bsky.social da auf die Beine gestellt hat und wie zahlreich Betroffene und Zugehörige teilgenommen haben. Vielen Dank euch allen! 🫶 #MEAwareness #Liegenddemo #ME/CFS

@dgspsoa.eurosky.social

Liegenddemo für #MECFS in #Hannover

Bild zum Beginn der Liegenddemo aus seitlicher Perspektive zur Bühne.

Im Vordergrund sitzen Menschen auf den Treppenstufen.
Im Hintergrund rechts ist der Stand von NichtGenesen Kids zu sehen.
Dazwischen sitzen und liegen viele Menschen.

Weiteres Bild aus seitlicher Perspektive, diesmal der mittlere Teil der Demo mit vielen Menschen auf Decken und Isomatten sitzend und liegend.

Im Hintergrund der Stand von NichtGenesenKids und der rote Stand vom SOVD Niedersachsen.

Bild vom Beginn der Liegenddemo vom hinteren Bereich, der sich im Lauf der Zeit weiter füllte.
Überblick bis zur Bühne.

Bild der Liegenddemo Hannover aus der anderen Perspektive, so dass auch ein Teil des Rathauses zu sehen ist.

Viele Menschen sitzen oder Liegen auf Decken und Isomatten. Im Hinteren seitlichen Bereich sitzen Menschen auf den Treppenstufen.

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Astronomer Royal for Scotland | Catherine Heymans

@astroroyalscot.bsky.social

over 1 year ago

It's #LongCovidAwarenessDay & my 3rd anniversary since developing covid-induced #ME/CFS. It's been quite the journey. This year I learned how to walk distances again 💪. Next year's goal is to be able to chat to folk for more than an hour without needing a long rest afterwards. Onwards & Upwards!

A woman (Catherine) in a black beanie hat, wrapped up from the cold, high up on a craggy rocky hillside, the sky pink with the early light of dawn.

pink skies from a high viewpoint, green grass and craggy rocks in the foreground, a mountain to the right (Edinburgh's iconic Arthur's Seat)

The iconic Arthur's Seat is in the distance with a red warning sign in the foreground with a toad on it. Toads must cross here!

Edinburgh's sky line with Edinburgh's castle in centre place.

Astronomer Royal for Scotland | Catherine Heymans @astroroyalscot.bsky.social

Today is International Long Covid Awareness Day, and coincidentally my 2nd anniversary of living with LC ME/CFS. The good news: I'm doing a lot better than I was, possibly because it's been 15 whole months since my last re-infection. Still a very long way to go though! 🤞 #LongCovidAwarenessDay

A screenshot from Twitter
"9yo "Mum I'm making you leech and potato soup to make you feel better". #livingwithcovid #homeschool

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DrChronically M.D.

@drchronically.bsky.social

about 2 years ago

Da Klinikärzte selten mit #MECFS vertraut sind, schalten sie Jugendämter ein, die nicht mit #ME/CFS vertraut sind und es entscheiden Richter, die nicht mit ME/CFS vertraut sind, dass nicht sein kann, was nicht sein darf und entziehen unschuldigen Eltern die Gesundheitsfürsorge. Schon wieder! ⬇️

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Jens-Bastian Eppler @ Real Scientists DE

@realscientists.de

8 months ago

Ich möchte noch was zur (online) Community der #LongCOVID & #ME/CFS Betroffenen sagen. Natürlich sind sehr viele Betroffene online aktiv, denn das Internet ist einer der wenigen Räume, in denen sie sich noch aufhalten können. Auch die meisten Selbsthilfegruppen finden natürlich online statt.

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