Lucibee
@lucibee.bsky.social
Science defender and eco-worrier.
(she/her)
(she/her)
They also need to be looking at small trials and case reports from other countries, because none of this stuff is being done in clinics in the UK.
Where is the actual innovation???
#MEDeliveryPlan
Where is the actual innovation???
#MEDeliveryPlan
February 10, 2026 at 6:39 PM
They also need to be looking at small trials and case reports from other countries, because none of this stuff is being done in clinics in the UK.
Where is the actual innovation???
#MEDeliveryPlan
Where is the actual innovation???
#MEDeliveryPlan
They admit in the introduction that the criteria is too restrictive, and then expand it in completely the wrong way.
Concentrating on pharma RCTs is completely the wrong way to go about this.
No-one is trying anything in this format! Because there is no research base in the UK. 🤦
Concentrating on pharma RCTs is completely the wrong way to go about this.
No-one is trying anything in this format! Because there is no research base in the UK. 🤦
February 10, 2026 at 6:36 PM
They admit in the introduction that the criteria is too restrictive, and then expand it in completely the wrong way.
Concentrating on pharma RCTs is completely the wrong way to go about this.
No-one is trying anything in this format! Because there is no research base in the UK. 🤦
Concentrating on pharma RCTs is completely the wrong way to go about this.
No-one is trying anything in this format! Because there is no research base in the UK. 🤦
Reposted by Lucibee
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
February 10, 2026 at 1:45 PM
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.
The Plan simply does not mention it.
Astounding. 😖
The Plan simply does not mention it.
Astounding. 😖
February 10, 2026 at 3:21 PM
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.
The Plan simply does not mention it.
Astounding. 😖
The Plan simply does not mention it.
Astounding. 😖
Reposted by Lucibee
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
![A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:wjbaponwuqichcsh2fiwono5/bafkreifod7x7n4p4nd4i7wresiukfpxc4sb3rewzva7r63te4vpqpioo2m@jpeg)
February 10, 2026 at 9:19 AM
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
She explains why CHC funding for very severe ME is an issue that deserves attention.
🔗 in next post 👇
Well damn! Just how many birds did they want me to ID today??? There were at least 3 in that clip!
Birdle 🇬🇧 10/02/2026
🟩⬜🟩🟩🟩
🟩🟩🟩🟩🟩
birdle.co.uk
Birdle 🇬🇧 10/02/2026
🟩⬜🟩🟩🟩
🟩🟩🟩🟩🟩
birdle.co.uk
Birdle United Kingdom
Play Birdle UK, a daily bird guessing game. Learn about British birds in just 5 guesses.
birdle.co.uk
February 10, 2026 at 3:03 PM
Well damn! Just how many birds did they want me to ID today??? There were at least 3 in that clip!
Birdle 🇬🇧 10/02/2026
🟩⬜🟩🟩🟩
🟩🟩🟩🟩🟩
birdle.co.uk
Birdle 🇬🇧 10/02/2026
🟩⬜🟩🟩🟩
🟩🟩🟩🟩🟩
birdle.co.uk
Reposted by Lucibee
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
February 10, 2026 at 11:07 AM
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
The document that NIHR produced is here: io.nihr.ac.uk/wp-content/u...
I'd be interested to know what you folks make of it.
I'd be interested to know what you folks make of it.
February 10, 2026 at 1:48 PM
The document that NIHR produced is here: io.nihr.ac.uk/wp-content/u...
I'd be interested to know what you folks make of it.
I'd be interested to know what you folks make of it.
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
February 10, 2026 at 1:45 PM
Just before I received the email about the FOIA request, I was looking at the Agreed Actions of the #MEDeliveryPlan again.
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
Some of the things I noticed, I've already mentioned in my thread on the FOIA data, but here's another thing that stood out.
It was one of the items on Research:
This looks a little bit tipping pointy... 😳 bsky.app/profile/wxnb...
Grazalema, Spain, received over 2,000 mm (78 inches) of rain in just the last 20 days.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
February 10, 2026 at 12:49 PM
This looks a little bit tipping pointy... 😳 bsky.app/profile/wxnb...
Reposted by Lucibee
Grazalema, Spain, received over 2,000 mm (78 inches) of rain in just the last 20 days.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
February 9, 2026 at 4:11 PM
Grazalema, Spain, received over 2,000 mm (78 inches) of rain in just the last 20 days.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
Over a year’s worth of rain — and it’s only early February. This is hydrologically absurd.
Reposted by Lucibee
Can anyone remember an old animation about little people in glass jars a bit like Small Prophets? I'm thinking Eastern European folk story type thing. The people may have been animated paper shapes. Possibly gold? A bit like Bagpuss would have in his story sections.
February 10, 2026 at 12:35 PM
Can anyone remember an old animation about little people in glass jars a bit like Small Prophets? I'm thinking Eastern European folk story type thing. The people may have been animated paper shapes. Possibly gold? A bit like Bagpuss would have in his story sections.
Reposted by Lucibee
Another good point: This summary slide.
Shame it’s right at the end.
Shame it’s right at the end.
September 8, 2025 at 3:18 PM
Another good point: This summary slide.
Shame it’s right at the end.
Shame it’s right at the end.
I suspect it's probably most of them. :(
February 10, 2026 at 12:06 PM
I suspect it's probably most of them. :(
Appending here... my review of Module 3 from last year: bsky.app/profile/luci...
I've just had a look at this module.
To my unexpert eye it looks reasonably OK.
The important thing to remember though is that this is not/should not be a replacement for proper clinical training in this area (of which there is none).
It does at least raise awareness among staff.
To my unexpert eye it looks reasonably OK.
The important thing to remember though is that this is not/should not be a replacement for proper clinical training in this area (of which there is none).
It does at least raise awareness among staff.
The third NHS ME/cfs e-Learning module was published last week, shortly after #Justice4ME launched.
Written by Dr David Strain, only those with a government, NHS or academic work email address have access. Why? Who did Strain consult with?
learninghub.nhs.uk/Resource/712...
Written by Dr David Strain, only those with a government, NHS or academic work email address have access. Why? Who did Strain consult with?
learninghub.nhs.uk/Resource/712...
February 10, 2026 at 11:59 AM
Appending here... my review of Module 3 from last year: bsky.app/profile/luci...
Reposted by Lucibee
Thank you for your efforts. Advocacy groups and people with ME/CFS should be asking all medical schools to provide similar information. Schools that do not have an updated curriculum or no curriculum at all could be picketed on ME/CFS awareness day. Medical schools hate bad publicity.
February 9, 2026 at 9:21 PM
Thank you for your efforts. Advocacy groups and people with ME/CFS should be asking all medical schools to provide similar information. Schools that do not have an updated curriculum or no curriculum at all could be picketed on ME/CFS awareness day. Medical schools hate bad publicity.
I think the modules on the portal are aimed at anaesthetists.
February 10, 2026 at 9:52 AM
I think the modules on the portal are aimed at anaesthetists.
First and second modules were always open to all.
February 10, 2026 at 9:49 AM
First and second modules were always open to all.
*Completed* the course. Still bad though.
February 9, 2026 at 10:58 PM
*Completed* the course. Still bad though.
Not to put you off, but the results might be confusing, as I suspect there are likely to be many more online modules available for that topic in different places.
February 9, 2026 at 10:57 PM
Not to put you off, but the results might be confusing, as I suspect there are likely to be many more online modules available for that topic in different places.
I had a quick look, and there seem to be a couple of modules available.
However, I'm not sure what asking the same question would reveal if head injury training is already part of core training that's available elsewhere (and potentially more extensively).
However, I'm not sure what asking the same question would reveal if head injury training is already part of core training that's available elsewhere (and potentially more extensively).
February 9, 2026 at 10:55 PM
I had a quick look, and there seem to be a couple of modules available.
However, I'm not sure what asking the same question would reveal if head injury training is already part of core training that's available elsewhere (and potentially more extensively).
However, I'm not sure what asking the same question would reveal if head injury training is already part of core training that's available elsewhere (and potentially more extensively).
Reposted by Lucibee
I'm pretty outspoken about the fact that I do not enjoy football, but I would pay hard-earned money to be able to participate in the halftime show dressed as a bush.
February 9, 2026 at 9:05 PM
I'm pretty outspoken about the fact that I do not enjoy football, but I would pay hard-earned money to be able to participate in the halftime show dressed as a bush.
I totally agree. Online modules are simply not enough. They can be useful as reminders of previous F2F teaching at best, and definitely not a replacement for it.
February 9, 2026 at 6:46 PM
I totally agree. Online modules are simply not enough. They can be useful as reminders of previous F2F teaching at best, and definitely not a replacement for it.
Access to the other 2 modules is "restricted" by the appallingly clunky and lengthy registration process!
February 9, 2026 at 6:44 PM
Access to the other 2 modules is "restricted" by the appallingly clunky and lengthy registration process!