Arthur
@unrealarthur.bsky.social
ME Patient-ly Waiting for Biomedical Research | Volunteer @crunchme.bsky.social
#GreatestMEdicalScandal @unreal_arthur crunchme.org
#GreatestMEdicalScandal @unreal_arthur crunchme.org
Pinned
Arthur
@unrealarthur.bsky.social
· Apr 5
1/9 Yes. The MOD have updated their recruitment criteria, here's a thread on the recent changes regarding #MyalgicEncephalomyelitis... it's shocking! 🧵
inews.co.uk/news/politic...
inews.co.uk/news/politic...
Army to recruit soldiers with ADHD, autism and ME amid staffing crisis
The Ministry of Defence is to take on a wider range of candidates as number of troops plummet to lowest level in 200 years
inews.co.uk
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behavioural therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) is outdated and will be removed..."
Reposted by Arthur
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
CrunchME - Data & Research Visuals
Shareable visuals giving insight into key aspects of ME/CFS, long COVID, and other infection-associated chronic illnesses
crunchme.org
November 27, 2025 at 5:13 PM
Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org!
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world
Reposted by Arthur
Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social
👇
👇
November 25, 2025 at 9:45 AM
Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social
👇
👇
Reposted by Arthur
Today’s Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour.
youtu.be/wZFEUnjWgOA?...
youtu.be/wZFEUnjWgOA?...
Westminster Hall Debate on Support for People with ME/CFS - November 2025
YouTube video by Broken Battery
youtu.be
November 19, 2025 at 6:25 PM
Today’s Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour.
youtu.be/wZFEUnjWgOA?...
youtu.be/wZFEUnjWgOA?...
Sir Charlie Mayfield, author of the Keep Britain Working Review, endorses the BioPsychoSocial model (mispronounces it) and also says he thinks we should mainly focus on the Psycho and Social parts…
November 6, 2025 at 8:28 AM
Sir Charlie Mayfield, author of the Keep Britain Working Review, endorses the BioPsychoSocial model (mispronounces it) and also says he thinks we should mainly focus on the Psycho and Social parts…
Reposted by Arthur
1️⃣ 🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity.
But it never mentions Long Covid.
Not once.
Not the pandemic either.
That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇
🔗 www.gov.uk/government/p...
But it never mentions Long Covid.
Not once.
Not the pandemic either.
That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇
🔗 www.gov.uk/government/p...
Keep Britain Working Review: Final report
Keep Britain Working is an independent review of the role of employers in tackling health based economic inactivity and promoting healthy and inclusive workplaces.
www.gov.uk
November 5, 2025 at 1:22 PM
1️⃣ 🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity.
But it never mentions Long Covid.
Not once.
Not the pandemic either.
That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇
🔗 www.gov.uk/government/p...
But it never mentions Long Covid.
Not once.
Not the pandemic either.
That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇
🔗 www.gov.uk/government/p...
Reposted by Arthur
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
October 31, 2025 at 11:42 AM
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
with @binitakane.bsky.social & @helenoakleigh.bsky.social
Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube
Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
Reposted by Arthur
There is no need for a moral panic about the UK's welfare system.
Far from perfect but recent discourse is nuts
Spending is controlled, not spiralling
Worklessness is near record lows
My column www.ft.com/content/ee67...
Far from perfect but recent discourse is nuts
Spending is controlled, not spiralling
Worklessness is near record lows
My column www.ft.com/content/ee67...
October 15, 2025 at 12:35 PM
There is no need for a moral panic about the UK's welfare system.
Far from perfect but recent discourse is nuts
Spending is controlled, not spiralling
Worklessness is near record lows
My column www.ft.com/content/ee67...
Far from perfect but recent discourse is nuts
Spending is controlled, not spiralling
Worklessness is near record lows
My column www.ft.com/content/ee67...
Reposted by Arthur
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Reposted by Arthur
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
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
Motion - NNDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
record.senedd.wales
October 6, 2025 at 10:33 AM
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
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
Reposted by Arthur
I wonder how long before the subs stop using "chronic fatigue syndrome". It's a lot of wasted line space compared with ME.
#ME #Editors #Journalism
#ME #Editors #Journalism
October 2, 2025 at 11:00 PM
I wonder how long before the subs stop using "chronic fatigue syndrome". It's a lot of wasted line space compared with ME.
#ME #Editors #Journalism
#ME #Editors #Journalism
Reposted by Arthur
Recording of the "On the Violence of Psychologisation of Postviral Illness: A Habermasian Solution?" talk - w. myself, @ffhambu.bsky.social, Sonja Hannibal & @privilegienschreck.bsky.social is now available online (with subs!) 😍 #LongCovid #MECFS #Injustice
t.co/jQYqzfIQNe
t.co/jQYqzfIQNe
https://www.youtube.com/watch?v=7jENpyRnYbE
t.co
September 24, 2025 at 12:24 PM
Recording of the "On the Violence of Psychologisation of Postviral Illness: A Habermasian Solution?" talk - w. myself, @ffhambu.bsky.social, Sonja Hannibal & @privilegienschreck.bsky.social is now available online (with subs!) 😍 #LongCovid #MECFS #Injustice
t.co/jQYqzfIQNe
t.co/jQYqzfIQNe
Reposted by Arthur
Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social
September 13, 2025 at 6:20 PM
Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social
Reposted by Arthur
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group
The process so far has been extremely progressive
I am hugely optimistic that a world-leading guideline will be produced
#pwME #MECFS
The process so far has been extremely progressive
I am hugely optimistic that a world-leading guideline will be produced
#pwME #MECFS
Myalgic Encephalomyelitis (ME) - HSE.ie
www.hse.ie
September 9, 2025 at 2:46 PM
Reposted by Arthur
🧵 Savannah update - please share widely.
Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME.
All her energy is being spent on calling for help.
There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join
1/2
Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME.
All her energy is being spent on calling for help.
There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join
1/2
September 8, 2025 at 6:12 PM
🧵 Savannah update - please share widely.
Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME.
All her energy is being spent on calling for help.
There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join
1/2
Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME.
All her energy is being spent on calling for help.
There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join
1/2
Reposted by Arthur
We were really encouraged by the support we had from the many Senedd Members (MSs) who visited the Severe ME Difrifol Cymru stall at Y Farchnad (The Marketplace) in @senedd.cymru on 15th July… 1/4
August 31, 2025 at 3:36 PM
We were really encouraged by the support we had from the many Senedd Members (MSs) who visited the Severe ME Difrifol Cymru stall at Y Farchnad (The Marketplace) in @senedd.cymru on 15th July… 1/4
Reposted by Arthur
🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
August 29, 2025 at 6:25 PM
🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
Reposted by Arthur
'standard operating procedures'. ME demands staff ignore SOPs. The on practical help I am aware of anywhere in the world is in the link pinned to my profile. In England pwME under NHS care are given PN and TPN once it is established they are starving, but only in hospitals. This destroys any chance
August 19, 2025 at 8:35 AM
'standard operating procedures'. ME demands staff ignore SOPs. The on practical help I am aware of anywhere in the world is in the link pinned to my profile. In England pwME under NHS care are given PN and TPN once it is established they are starving, but only in hospitals. This destroys any chance
@stevefifield.bsky.social perhaps forward this to Peter W? I can't find his handle here.
I hope @actionforme.bsky.social applies for this award, even if they may be too small to be eligible. Publication of the #PlanForME and #DecodeME is the culmination of work they led on. The charity could then use these funds to lead on patient safety #pwME
www.kingsfund.org.uk/insight-and-...
www.kingsfund.org.uk/insight-and-...
August 12, 2025 at 4:45 AM
Reposted by Arthur
🧵For decades, parents of children with #MECFS have faced false accusations of Fabricated or Induced Illness
It’s like being committed to a psychiatric hospital when you’re not mad… easy to throw around, very difficult to disprove — Clip - Dr Nigel Speight, Panorama (1999)
It’s like being committed to a psychiatric hospital when you’re not mad… easy to throw around, very difficult to disprove — Clip - Dr Nigel Speight, Panorama (1999)
August 11, 2025 at 9:41 AM
🧵For decades, parents of children with #MECFS have faced false accusations of Fabricated or Induced Illness
It’s like being committed to a psychiatric hospital when you’re not mad… easy to throw around, very difficult to disprove — Clip - Dr Nigel Speight, Panorama (1999)
It’s like being committed to a psychiatric hospital when you’re not mad… easy to throw around, very difficult to disprove — Clip - Dr Nigel Speight, Panorama (1999)
Reposted by Arthur
In our case Maeve was diagnosed at 17. It took 4 years to obtain. There were no Safeguarding referrals because she didn't miss any schooling. She loved to learn and was a joy to teach.
She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her
1/2
She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her
1/2
August 10, 2025 at 4:15 PM
In our case Maeve was diagnosed at 17. It took 4 years to obtain. There were no Safeguarding referrals because she didn't miss any schooling. She loved to learn and was a joy to teach.
She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her
1/2
She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her
1/2
Reposted by Arthur
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
August 10, 2025 at 7:17 AM
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
1/4
Reposted by Arthur
Emily said the online version will be given more space. Huge thanks to her & the Sunday Times (@thetimes.com) for giving this aspect the exposure Devon County Council so successfully covered up. Their right of reply says it all. Maeve was taking them to judicial review. Died trying. #MaeveInquest
August 10, 2025 at 5:17 AM
Emily said the online version will be given more space. Huge thanks to her & the Sunday Times (@thetimes.com) for giving this aspect the exposure Devon County Council so successfully covered up. Their right of reply says it all. Maeve was taking them to judicial review. Died trying. #MaeveInquest
Reposted by Arthur
🚨!!PLS SHARE & TAG #pwME !!🚨
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid
August 9, 2025 at 12:33 PM
🚨!!PLS SHARE & TAG #pwME !!🚨
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid