Arthur
@unreal_arthur
ME Patient-ly Waiting for Biomedical Research | Volunteer @WeCrunchME #GreatestMEdicalScandal http://unrealarthur.bsky.social
1/3 Update: Good News! MP wrote to the minister and this was their reply, "I can confirm that the guidance regarding cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) is outdated and will be removed..."
1/9 Yes. The MOD have updated their recruitment criteria, here's a thread on the recent changes regarding #MyalgicEncephalomyelitis... it's shocking! 🧵
It is my birthday this week 🥳🎈 And I'm a running my bday fundraiser for @wecrunchme! If you appreciate our work *and* have the means, please consider chipping in a digital 🍺 If unable, retweets are v gratefully received too! TYSM, link below #MECFS #LongCovid
The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…
Update on my birthday fundraiser for @wecrunchme 🎈 We are *very* close to hitting our primary target of £1,000 - thank you so much to everyone who has donated so far 💙 Can you help us get over the £1k line...? (Link below) #MECFS #LongCovid #Philanthropy
(1/5) It has been great to collaborate with @ThereForME_UK this year on their campaign to create an NHS that's there for people with ME and Long Covid.
Today we’re celebrating a year to the day since @KarenLHargrave & @GoreLloyd launched #ThereForME! We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far.
My friend, Savannah, a 23yo woman with severe ME/CFS, is currently in a London hospital being denied the care she needs after being told to seek psychiatric help instead. Please help - sign the petition. change.org/SaveSavannah @MEAssociation @MEActNet @WorldMEAlliance
Channel 4 News segment (5 mins) on the new government delivery plan for #MECFS. Interviews with Dr @BinitaKane, Sajid Javid and Nick Benton a patient and his family. youtu.be/1sYD5iBXw8k?si…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”
The @JoeFinneganShow intends to do a series on the devastating & life-changing illness ME/CFS. Listen to the first episode here 👇 (25 mins). V. well done. Moving & relatable email from listener who describes becoming a "ghost" in their own life. Interviews parent, Dr Speight.
Podcast: ME/CFS northernsound.ie/podcasts/the-j… via @NorthernSoundFM
Karen Hargrave - @KarenLHargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions, also includes a representative from BACME. youtu.be/R6AReGLoy4o?si…
Sean O’Neill on Times Radio talking about the new government delivery plan for ME/CFS “I’ve never seen a plan that lacks detailed quite such as this. I think it you couldn’t really call it a plan at all, it’s a kind of wish list.” youtu.be/wu21bQ6GEg4?si…
5 Live Breakfast segment on the UK government's new #MECFS Delivery Plan (9 mins) Interview with Sarah Boothby “There is no expertise anywhere within the NHS and this plan is not going to provide any.” youtu.be/myisnymUcC0?si…
BBC Breakfast segment on the UK government's new #MECFS Delivery Plan (12 mins) Features Sarah Boothby and Dr Binita Kane, who warn the plan doesn't go far enough and won’t lead to immediate change for patients. youtu.be/GZbSrdtiA9k?si…
The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)
Thank you so much @JoeFinneganShow and @NorthernSoundFM. This is an excellent 25min segment. Thank you Dr Speight, Shirley, Ciaran, @TomKindlon and @IrishMECFSAssoc. Looking forward to future segments in the coming months! Please keep up the good work spreading awareness!
Podcast: ME/CFS northernsound.ie/podcasts/the-j… via @NorthernSoundFM
Thanks very much to Joe Finnegan & team for today's 25-minute segment on ME that we were very pleased with. A recording is available here northernsound.ie/podcasts/the-j… #MEcfs #CFS #PwME 1/
Podcast: ME/CFS northernsound.ie/podcasts/the-j… via @NorthernSoundFM