Michiel
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murtoz.bsky.social
Michiel
@murtoz.bsky.social
Dutchman in Scotland. Lounge based Landscape Photographer. Medically Retired Hardware Engineer. Tired Tinkerer. FOSS Fan. Ally. PwME/LC. Volunteer with #MEAction Scotland. He/Him. #BIPOCLivesMatter #EndGenocide #CovidIsAirborne #YallMaskin #CleanTheAir
Pinned
I did an interview last week about living with ME. This article is the result.
Pleased with it overall, no glaring errors, and most of my key messages are in the article even if she didn't put some of the more 'difficult' points in there verbatim.

#mecfs #pwME

www.scotsman.com/health/me-ch...
'My daughter has ME, she went into appointments walking and came out in a wheelchair'
There are an estimated 1.3 million people in the UK with ME 🏥
www.scotsman.com
@ashleydaltonmp.bsky.social @tessamunt.bsky.social this is why Savannah is starving to death inside an NHS hospital right now.

A voluntary e-learning course was never going to cut it.
33/611000 doctors & nurses in NHS = 0.005% of NHS staff now with basic awareness of severe #ME/CFS.

It's farcical.
5/n

Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
February 9, 2026 at 5:05 PM
Reposted by Michiel
5/n

Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
February 9, 2026 at 4:43 PM
Reposted by Michiel
4/n

According to the Nuffield Trust, about 1.7 million people work in the NHS.

This includes 188,000 doctors and around 423,000 nurses and midwives.

The Royal College of Physicians has over 40,000 members.

www.nuffieldtrust.org.uk/resource/the...
The NHS workforce in numbers
Facts on staffing and staff shortages in England.
www.nuffieldtrust.org.uk
February 9, 2026 at 4:30 PM
Reposted by Michiel
3/n

The UK Government stated that "The Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists agreed to share and promote NHS England’s e-learning modules," and that they were working with the Royal College of Nursing.
February 9, 2026 at 4:18 PM
Reposted by Michiel
2/n

The reason I asked was because the ME/CFS Delivery Plan makes some quite distinct promises (alright, "aims") about their e-learning package, including this item in their table of Agreed Actions.

www.gov.uk/government/p...
February 9, 2026 at 4:11 PM
Reposted by Michiel
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n
February 9, 2026 at 3:57 PM
Reposted by Michiel
🧵In all the media chat around No 10, missing are disabled people against whom this government declared war within weeks of coming to power. Ministers and No 10 comms whipped up bigotry to justify welfare cuts that weren't in Labour's manifesto. Ableism is normalised now in a way not seen in decades.
February 9, 2026 at 12:47 PM
@georgemonbiot.bsky.social have you seen the below? Basically a repeat of what happened to Maeve.

Can you do anything to help give this the publicity it needs?

Thank you 🙏
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.

Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.

Can you help in any way?
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
February 9, 2026 at 12:51 PM
#pwME #MECFS
Savannah still needs our help!
Fundraiser now over 9k - amazing but not enough for sustained legal representation and private care. Keep sharing & giving!

Please also email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 9, 2026 at 11:44 AM
#pwME reminder that Savannah needs our help.

Please email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”

Also please keep donating to and sharing her fundraiser.
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 6:23 PM
Reposted by Michiel
All mod cons - from my ME/CFS photo project

glass.photo/andrewgiffor...

ALT: colour photo of a Vax carpet cleaner, made of black and transparent plastic, standing in the corner of a blue walled room, surrounded by fluff and dust

#Photography #MECFS #LongCovid #StillLife
All mod cons:
Andrew Gifford on Glass
glass.photo
February 8, 2026 at 5:10 PM
Reposted by Michiel
The thing about this pandemic
Is it made many feel the void inside themselves
Emptiness screamed while the world was silent and still

Their souls tried to tell them it was meant for compassion
But all they could feel was the loss of consumption
In the hole they have yet to fill
February 8, 2026 at 2:18 PM
Reposted by Michiel
Stop spreading diseases by neglect.

It’s a tool of oppression.
February 8, 2026 at 12:25 PM
Reposted by Michiel
This is so important. Savannah is on her own in the most terrible circumstances. So far the consultants (not specialists in #ME as there are non) are determinedly ignoring advice from Drs who do understand what treatment she should have. Spread the word. It’s literally a life and death situation.
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 10:33 AM
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.

Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.

Can you help in any way?
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 9:56 AM
Reposted by Michiel
Absolutely, yes. This is why I'm calling it. I've been very polite in the past. But now I realise I'm wasting my time. So I'm going to just complain about it until he actually talks about it in one of his many interviews and discussion panels.

He is missing a trick.
February 7, 2026 at 2:25 PM
Reposted by Michiel
And it’s not just mental heath crises. Fully half of the people killed by police in the US have a disability.

What folx need to understand is that cops are not well-trained in deescalation or conflict resolution.

All they have that we don’t is that gun, and permission to use it to end a conflict.
Half of People Killed by Police Have a Disability: Report
"Police have become the default responders to mental health calls"
www.nbcnews.com
February 7, 2026 at 7:23 PM
Reposted by Michiel
The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳

If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!

And if you needed a little more time, here it is!

Instructions:
February 7, 2026 at 8:13 PM
Reposted by Michiel
The risk of the airborne transmission of disease correlates with the amount of infectious exhaled aerosol. Since people exhale CO2 with aerosol, its conc has been used as proxy for exhaled aerosol

In this article, researchers propose a new way to estimate risk of transmission
February 7, 2026 at 6:46 PM
@zackpolanski.bsky.social I know you're busy with important matters - but Savannah will die at the hands of the NHS if nobody takes action - and they aren't.

Please can you get involved?

@greensagainstcovid.bsky.social @greenparty.org.uk can someone closer to Zack get his eyes on the below pls!
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 8:01 PM
@ashleydaltonmp.bsky.social @tessamunt.bsky.social

You're out of time for discussions. Someone needs to ACT NOW or Savannah will die. It might already be too late.

PLEASE overrule the hospital before they kill her.

She has her own experts who know how to treat her. They need to be listened to.
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 6:29 PM
#mecfs #pwME

There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.

This is MURDER.

All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 6:19 PM
Reposted by Michiel
Fascinating preliminary finding: Correa-da-Silva et al. see a near-complete loss of CRH-neurons in 5 postmortem brain samples of people with #MEcfs, not seen in many controls. A corresponding loss of cortisol in the cerebrospinal fluid was also observed.
www.youtube.com/watch?v=30Dk... (7-13mins)
February 7, 2026 at 12:12 PM
Reposted by Michiel
MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...

#MyalgicEncephalomyelitis
February 7, 2026 at 12:25 PM
Reposted by Michiel
Worse and worse.

'Labour Together' was a pretty ironic name, really.
February 7, 2026 at 11:17 AM