Lucibee

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

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. 🤦

ME/CFS Final Delivery Plan – Agreed Actions. https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-the-final-delivery-plan#agreed-actions Research. Action: The NIHR will commission an NIHR Innovation Observatory Review of relevant new and repurposed medicines in clinical development for the treatment of ME/CFS Progress: The research community has provided helpful insights on potential therapeutics and the NIHR Innovation Observatory has completed a horizon scan which focused on medicines with a UK licence which might be ready for later phase (in phase 2 or phase 3) clinical trials. Timeline and measure of success: Completed - the report has been published. https://io.nihr.ac.uk/wp-content/uploads/2025/06/Pipeline-for-ME_CFS_report-on-MInD-data.pdf NIHR will consider these insights to develop a new Application Development Award. My comment: Most of the drugs in this report are monotherapies that are not specifically aimed to relieve specific symptoms of ME/CFS. Most of the trials are in Long Covid or Fibromyalgia and not ME. Not encouraging that the report starts by saying “The hallmark symptom in ME/CFS is extreme, persistent fatigue.” There is no mention of PEM.

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:

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. 😖

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.

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 👇

Birdle United Kingdom Play Birdle UK, a daily bird guessing game. Learn about British birds in just 5 guesses.

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

'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

Screenshot of first page of the report. Medicine Pipeline for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS): a preliminary report using MInD data.

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.

ME/CFS Final Delivery Plan – Agreed Actions. https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-the-final-delivery-plan#agreed-actions Research. Action: The NIHR will commission an NIHR Innovation Observatory Review of relevant new and repurposed medicines in clinical development for the treatment of ME/CFS Progress: The research community has provided helpful insights on potential therapeutics and the NIHR Innovation Observatory has completed a horizon scan which focused on medicines with a UK licence which might be ready for later phase (in phase 2 or phase 3) clinical trials. Timeline and measure of success: Completed - the report has been published. https://io.nihr.ac.uk/wp-content/uploads/2025/06/Pipeline-for-ME_CFS_report-on-MInD-data.pdf NIHR will consider these insights to develop a new Application Development Award. My comment: Most of the drugs in this report are monotherapies that are not specifically aimed to relieve specific symptoms of ME/CFS. Most of the trials are in Long Covid or Fibromyalgia and not ME. Not encouraging that the report starts by saying “The hallmark symptom in ME/CFS is extreme, persistent fatigue.” There is no mention of PEM.

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:

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.

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.

Summary slide reads: Severe ME/CFS is as disabling as late-stage multiple sclerosis, advanced cancer, and end-stage renal failure and yet receives a fraction of the research funding. It is a devastating disease, affecting tens of thousands of people in the UK alone. Currently, the prognosis is poor, with minimal recovery rates and a high degree of long-term disability. Our focus as healthcare practitioners is to stay informed about the latest research and apply evidence-based care practices with empathy and understanding to improve the quality of life for those affected.

Another good point: This summary slide.
Shame it’s right at the end.

I suspect it's probably most of them. :(

Appending here... my review of Module 3 from last year: bsky.app/profile/luci...

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.

I’m so sorry. 😥

First and second modules were always open to all.

*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.

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).

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.

Access to the other 2 modules is "restricted" by the appallingly clunky and lengthy registration process!

Most MPs are not in government so will not have a gov.uk email address.

Access for module 3 is restricted to gov.uk, ac.uk, and nhs email accounts. re NHS login, I have a suspicion that it is also restricted so that you can only access it while logged into the nhs network (ie, at work), which will make it difficult for most clinical staff.

tbh the numbers are so low that I don't even care 🤷

I'm not sure they do.
@tessamunt.bsky.social ?

Most MPs don't have gov.uk email addresses. 😬