@ashleydaltonmp.bsky.social how many more of us have to STARVE to death at the hands of the NHS before you DO SOMETHING?

The countdown is on and our final ‘10 birds’ guide is here... Spotting these on your patch? Now that’s lucky! 😍 Don't forget to sign up: www.rspb.org.uk/whats-happen... #BigGardenBirdwatch

From @meresearchuk.bsky.social The researchers using multimodal analysis to test blood from individuals with ME/CFS concluded that their study provides "compelling evidence" #MECFS is associated with concurrent dysfunction across multiple biological systems. Read more: tinyurl.com/2t9rc6jp #PwME

All members of the APPG on ME need to read this article from @abrokenbattery.bsky.social which clearly shows how much work needs to be done if there is to be any real, lasting change for #pwME medium.com/@abrokenbatt...

#januarty prompt today is #blue. This took a minute because there's so many I would like to share on this prompt. I finally chose this photo of the moon. It has flaws, but was one of my first attempts to ever capture the moon photographically.

I'm giving a talk next week and you're invited! ✨Improving Quality of Life in ME/CFS and Infection-Associated Chronic Conditions✨ The talk is donate-as-you're-able, and 20% will support #MEAction. You can sign up to attend here: us06web.zoom.us/meeting/regi...

Here's the link without the ":5037" portion of the URL (dunno why Science Direct is including this unusual port # in their URLs): www.sciencedirect.com/science/arti...

Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to -replicate #MEcfs genetic signal & -show its shared/distinct genetics with Long Covid. Next: replicate ME/CFS subtypes w/ targeted therapies www.medrxiv.org/content/10.6...

‘Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine.’ #MEKills #PlanForME #JusticeForME #MaeveInquest

This brilliant video about the #GreatestMEdicalScandal has been out for a while but it’s worth reposting in case you haven’t seen it… If you don’t know much about #MEcfs or #LongCovid, or aren’t aware of the shocking treatment of people, please watch & help advocate for us! #JusticeForME #SevereME

‘Support for people living with ME is international & has deep roots, so we are not short on knowledge. Thanks to every one of you who has shared, promoted & donated. We would not be doing this without you, & thanks to you we continue to the next stage - under less pressure of time’

Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID. Addressing what they call “one of the greatest public health challenges of the 21st century.” www.zeit.de/politik/deut...

An employer who doesn't know the absolute basics of how disability is defined in employment and discrimination law. Massive surprise... 🙄

At the #ICanCME2025 conference today! Sabrina Poirier & Maeghan Taverner's intros blew me away. ~Acknowledging labor from people with lived experience ~Setting out expectations ~Moment of silence for those we've lost This is what a conference designed by people with lived experience looks like 🧪

Sounds like they’re still focusing on the same model that hasn’t worked for many years for so many! Isn’t it unintelligence that does the same thing thinking it will produce a different outcome? Oh dear Perhaps get a disabled person to report on what being disabled is, unless this person is?!?

Many thanks for sharing @medidier.bsky.social … and thank you for this thread @spichaksimon.bsky.social 💙 #MyalgicEncephalomyelitis

The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...

I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️

Emerge Australia Research Digest | Issue 122 emerge.org.au/researchdige... I find the audio summaries useful #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

Today, thirty-six years ago. The Guardian, UK. 24th October 1989. #myalgicencephalomyelitis #cfsme #myalgice #mecfs

For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link: crowdfund.berkeley.edu/project/47768

When you wake up every morning nervous, with a feeling of dread. Not because you have an important meeting coming up, or work pressure... But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.

Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS. twitter-thread.com/t/1981309222...

@simonmcg.bsky.social @cgatist.bsky.social please share to your networks

"Left to rot". Exactly. Now people are getting it.

"Understanding concussion in #myalgicencephalomyelitis / #chronicfatiguesyndrome: Findings from 2023 National Health Interview study" www.tandfonline.com/doi/full/10.... Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen

There are a huge number of people who leave the beach as soon as the sun sets. They are missing some brilliant shows. #sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings

13 DAYS TO GO! Let’s see if the target can be reached (£15,000) Currently at £11,500 & climbing thanks to our amazing community donating what they can 💙 🫂🙏🏼🙌🏽✨

#ME #Disability #Psychiatry #Biopsychosocial @meassociation.org.uk @longcovidsupport.bsky.social #Justice4ME #Plan4ME #HumanRights @ashleydaltonmp.bsky.social @decodemestudy.bsky.social

With thanks to @georgemonbiot.bsky.social for his unwavering support for our community & this horrendous disease where we are failed by so many 💙 #MyalgicEncephalomyelitis

Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...

On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.

The mystery of medical diagnosis!

Tomorrow, Tue 7 Oct, the Welsh Senedd Business Committee will consider allocating 15 Oct to a Severe/Very Severe ME debate. It has a good chance of being selected. #pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion. Find your 1/2 record.senedd.wales/Motion/8884

Thanks to great work by @severemecymru.bsky.social and vital support from Adam Price and others Member Debate on severe #MEcfs has been selected for debate by Senedd on 15 October 2025. record.assembly.wales/Motion/8884

@nhsmillion.bsky.social #MillionsMissing #pwME #CPD

#pwME #MyalgicEncephalomyelitis Many of us are still Alive amazingly after 30/40/50+ years of this hell And yet we still have the fight and human spirit to believe in a better life. Many unsurprisingly are choosing an early death due to the unbearable hell that is this horrendous disease.

Delighted to see this at iver £10,000 now! We are a brilliant and united community and I am so proud of us all. We deserve SO MUCH BETTER #Justice4ME www.crowdjustice.com/case/justice...

@stripylightcic.bsky.social also having trouble getting a response about said training too more about the nature of it… but, perhaps they’d be more enlightened with the #StripyLightbulb training instead? youtube.com/shorts/ERPYv...

Thank you to all who have given patient testimony 🙏 Healthcare still has A LONG way to go to meet patients needs. The form is still open 👇 forms.gle/jSCvZN39xAumjg…

A mass walkout of the UN General Assembly as Netanyahu prepares to speak.

The hero strikes again! 💪

Public Accountability Bill Gratitude to those who have stood together over years in this fight for us all. A step towards making the process of uncovering injustice fair… will it work for #pwME ? #JusticeforME

🙏Thank you to Chronic Living Therapy for writing this important open letter to BACP about their article about gaslighting that included controversial: 👉 mind-body therapies 👉 trauma based theory 👉 neuroplasticity LCA have co-signed 📃👇 chroniclivingtherapy.com/open-letter-...

Professor Catastrophe from @longcovidadvoc.com longcovidadvocacy.substack.com/p/professor-...

How quickly minds can jump to their own conclusions rather than rationally addressing the actual literal causational matter… What a fine example, thank you for sharing, both