If you're reading this and thinking "nuh-uh, I'm totally a real trans ally", that's great! What was the last bit of active allyship you did? If it's been a while, I made this little doc of options for easy allyship to help you get started: docs.google.com/document/u/0...

After a lifetime with M.E. with her childhood, teenage years, & 20’s taken from her, Nevra didn’t want to reach 30 unless there was a cure or some improvement. This is an intensely traumatic milestone for Nevra.

Thank you for your response to our initial DNA results last week. We have been blown away by all your messages, support and kind words 🙏

'Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive. It is playing out right now in how we understand and discuss #LongCovid, and as we have done in relation to #MEcfs for decades.' May be one of main reasons why no further in finding a cure for those conditions

Nach der Stellungnahme der #DGN zu #MECFS habe ich mit der Psychotherapeutin Bettina Grande @bettinagrande.bsky.social gesprochen. (S+) Wie geht es ihren Patient:innen mit #MECFS? Was sagt sie zur DGN-Stellungnahme, was zum biopsychosozialen Modell, was zu Suizidgedanken Erkrankter?

Offener Brief an Prof. Berlit Generalsekretär der @dgn-ev.bsky.social - Auszüge "Das Bild von ME/CFS-Betroffenen, das die Stellungnahme der DGN und Ihr Interview zeichnen, hat kaum etwas mit der Realität zu tun, die wir täglich erleben. 1/ #DGN

Es gibt unter Menschen, die nicht von ME/CFS oder anderen marginalisierten Krankheiten betroffen sind, eine weitverbreitete Illusion: Dass wir in einem Sozialstaat leben, in dem alle Kranken zumindest eine grundlegende auf sie zugeschnittene medizinische Versorgung erhalten. 🧵

In criticising DecodeME. The usual psychologisers, Paul Garner, Alan Carson, Simon Wessely, have all focused on one argument. They say: “Genetic associations are also found in depression”. As if that makes finding them in ME/CFS meaningless. 🧵

„Wir müssen Sie zusammenbrechen sehen“ Wenn ÄrztInnen und Institutionen NICHTS , aber auch gar nichts von MECFS verstanden haben und dem ärztlichen Leitsatz „nicht schaden“ ignorieren. Grausam. #MECFS #MillionsMissing www.woz.ch/2438/long-co...

Jedes Auftreten von #PEM muss bei #MECFS nach Möglichkeit vermieden werden, da jedes Mal die Gefahr einer dauerhaften Verschlechterung besteht. In dieser Befragungsstudie berichteten 67,1% der Betroffenen, das bereits erlebt zu haben. Also keine Seltenheit, sondern reale Gefahr.

#DecodeME: David Tuller interviews Chris Ponting about the study results #MEcfs #pwME youtube.com/watch?v=CGUm...

Very Severe ME is a relentless suppression of everything it means to be human, a denial of nearly every one of the most basic instincts and desires. And where even the capacity to grieve or process that incomprehensible loss is taken away.

August 8 is Severe ME Day. It recognizes the 25% of people with myalgic encephalomyelitis (ME) whom this neuroimmune disease has left so severely ill, we're home- or bedbound. 1/

Darüber (und über vieles andere) sollten @dgn-ev.bsky.social und ihr Generalsekretär einmal nachdenken, bevor sie sich zu #MEcfs äußern und zur Prävention von Sterbefällen unter #pwME. (Der ganze 🧵ist sehr lesenswert.)

Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome now on medRXiv www.medrxiv.org/content/10.1...

Just signed this petition. A hospital ward is no fit place for a person with severe ME. Hope the NHS will take Dill’s needs into account asap. #MEcfs #MyalgicE #pwME #severeME chng.it/4stnKqWn4w

💙8.August ist #SevereMEday💙 Der heutige 8. August ist Betroffenen mit (very) severe #ME/CFS gewidmet. CN: Schwer und sehr schwer von ME/CFS Betroffene sind durch die Stärke der Symptome oft nicht mehr in der Lage, das Bett zu verlassen und verschwinden so aus dem öffentlichen Leben. 1/5

Heute ist #SevereMEDay! Gutes Aufklärungsvideo über #VerySevereME und #SevereME auf englisch! Vom Gesundheitssystem gibt es nach wie vor keine Versorgung❗ Wer mit #VerySevereME nicht von Angehörigen gepflegt wird, stirbt besonders grausam❗ www.dialogues-mecfs.co.uk/films/severe...

💙 8 août – Journée mondiale de sensibilisation à l’EM sévère 💙

Ernstig ziek: onzichtbaar, maar niet vergeten 🗓️Vandaag, 8 augustus, is het severe ME Day. ME/cvs is net zoals long covid een post-acuut infectieuze ziekte (PAIS). Er bestaan verschillende gradaties in ernst. Hoewel alle patiënten met een PAIS erg beperkt zijn, staan we vandaag stil bij de 1/3🧵

Heute ist #severeMEday. Der 8. August soll an die oft unsichtbaren Lebensrealitäten von Betroffenen mit den schwersten Ausprägungen von #MECFS erinnern und den dringenden Bedarf an Aufklärung, Forschung und Versorgung betonen. #SevereME #MEcfs #MEAwareness #MillionsMissing

Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME). We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.

Today is #SevereMEDay 💙 Around 1 in 4 people with ME are severely affected by the condition. They experience extreme physical, cognitive and sensory dysfunction that leaves them bed or housebound.

Heute ist SevereME-Day, der Tag an dem wir auf schwer(st) von ME/CFS Betroffene und Verstorbene aufmerksam machen. Nach all den Jahren ME/CFS-Aktivismus fühle ich mich aber leer. Unser Leid ist bekannt, dennoch wird weggeschaut. Auch dieses Jahr wird es keine Solidaritätsbekundungen geben.

(2/2)

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

A study that is very personal to me, as a person with #MEcfs and having been one of the research participants. Findings suggest a genetic component to the disease. Linked with genes associated with immune response, chronic pain & more. #DecodeME #openacess #openresearch

#DecodeME on Channel 4 news #MEcfs #MyalgicE #pwME #MEscience youtu.be/DWCF1_-0yP0?...

New press release: "Key genetic differences found in people with ME/CFS" www.ed.ac.uk/news/key-gen... "At least two of the genetic signals relate to how the body responds to infection" #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

The preprint of @decodemestudy.bsky.social’s initial results: www.research.ed.ac.uk/en/publicati... #MEcfs #MEscience #MyalgicE #DecodeME #pwME

Now on @decodemestudy.bsky.social’s #DecodeME ‘s website: www.decodeme.org.uk/initial-dna-... #MEcfs #MEscience #MyalgicE #pwME #MyalgicE

www.newscientist.com/article/2491... #MEcfs #MEscience #pwME #DecodeME

#DecodeME in case you a quick reminder about DNA and how it underpins this study: DNA carries the instructions for how to make and run a human body. It’s effectively a very long string of four different chemicals, named A, T, C and G for short. 1/

As part of a news piece on Decode ME for Reporting Scotland, News at Seven, one of our amazing #MEAction Scotland volunteers, Amanda Stephen, has been interviewed about her experience of ME & the need for research. ow.ly/LKKr50WAI8Y #DecodeME #MyalgicEncephalomyelitis

Looking forward to this with more anticipation than most shows I watch 😂 I'm in this, for a start! Fingers crossed for initial results that have a way forward in them.

Thrilled to see this announced. Also: The communication from the @decodemestudy.bsky.social team has been fantastic throughout and this is another instance of communicating excellently with #pwME. #MEscience #LCscience #MEcfs #MyalgicE #LongCovid

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

#MEcfs @decodemestudy.bsky.social: "We plan to send you an email with [initial DNA findings] on [6 August]...We're letting you know the timing in advance so you can pace yourself if needed." This is unbelievably exciting, & how lovely that our energy levels/PEM are considered by the research group!

An email was sent to @decodemestudy.bsky.social newsletter subscribers minutes ago, announcing publication of initial DNA results from the DecodeME study this Wednesday around 7 pm (UK time, I assume). A Science for ME thread discussing the news: www.s4me.info/threads/uk-d... #MEcfs #pwME

Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration. New post at Absolutely Maybe .... 1/2 absolutelymaybe.plos.org/2025/07/31/s... #MECFS

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

It seems like a dud of a Final Delivery Plan ( #NonDeliveryPlan ) on #MEcfs was quietly published in the UK during the night coinciding with the start of the summer recess of the House of Commons. #MyalgicE #pwME #LongCovid 1/

My dear friend Nevra is struggling to keep a roof over her head. Any donation you can spare is deeply appreciated, as is sharing and boosting her posts. #MEcfs #NEISvoid

1) We’ve changed our name to ME/CFS Science! We hope to keep sharing in-depth analysis of ME/CFS research, focusing on data and methodology, trying to separate hype from real progress.

Einer meiner Wünsche zum #DisabilityPrideMonth wäre, dass sich Nicht-Behinderte mit dem Thema Ableismus auseinandersetzen, Behinderten zuhören und eigenes Verhalten reflektieren. Oder einfach selbst mal laut sind, Ableismus ansprechen und Inklusion leben. 1/2

So, when push came to shove, more than 70 so-called 'rebels' decided that their career prospects were more important than the welfare of the disabled constituents they represent. These 49 are decent people. They stuck to their guns.

“No Labour MP who backs it should be forgiven.” #labour #starmer #pip

“Forget the MPs who rebel over cutting disabled people’s benefits - remember those who don’t. Just as Iraq was for Blair, disability cuts is the moral stain that will mark Starmer and his government for years to come, whether they succeed or not.” My col. www.theguardian.com/commentisfre...