United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

Why would an unprecedented pandemic caused by an escaped lab-manufactured killer virus which interrupted life for a few years around the globe, killing millions and leaving millions more with residual ill health for which there is no explanation or treatment, cause those unwell survivors anxiety?
Snowflakes.

 

no not for certain, which may or may not increase the anxiety of those affected.

https://www.bbc.co.uk/news/articles/cd9qjjj4zy5o

 

Two articles in the Times:

"Plan to help ME sufferers has been delayed for too long" (written by Helen Morgan, Lib Dem MP for North Shropshire):

Link | Archive link

and "Plan to help ME sufferers will not include extra funding":

Link | Archive link

Thread on the Delivery Plan here

 

UK Research & Innovation

• 11 February 2025
  Opportunity name changed from 'Researching ME/CFS: highlight notice' to 'Researching ME/CFS: priority area'. Research areas updated.

https://www.ukri.org/opportunity/researching-me-cfs-priority-area/

 

"How a promising triathlete was left bedridden by cruel disease" (The Sunday Times):

James Walton was aiming for the world championships when he was suddenly struck down by chronic fatigue syndrome. He is now calling for more research into ME

Link | Archive link

 

Good article. Plus a link to Emily’s fundraiser for AfME at the end which is good to see. Thanks to the journalist, Julieanne Corr, and to James and Emily. And extra respect to Emily for standing by James and becoming his carer having only known him for 9 months before he became unwell.

 

"If we can’t learn from errors, families relive tragedy for nothing" (Sean O'Neill, The Times):

Link | Archive link

 

The looks like a disaster. Re-writing NICE to suit the girls' and boys' jobs.
It explicitly indicates that physicians are irrelevant and that what matters is the multidisciplinary service buck to which people will be passed.

Be ever so careful what you wish for guys.

 

Why does it feel like often the more attention we get the worse things get.

 

Nope.

 

I've started a new thread on this here:

HSE Clinical Practice Guidelines for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Ireland)

 

HSE is Ireland not UK. Northern Ireland comes under NICE.

A webinar has been arranged for GP's in Northern Ireland on ME to be given by NHS tutors in March. No idea how good it will be. @Keela Too might know.

 

If I remember correctly, NICE guidelines do not automatically apply to Northern Ireland, they have to go through a local vetting first to check there are no specific adaptations required for the local needs. However they are usually adopted with only a few restrictions or reservations.

 

I’m not involved.

Maybe ask Joan McParland & Hope 4 ME & Fibro NI if they are involved

 

Apparently NICE guidelines get adopted in NI as a whole. (Pre NG206 we tried to have an exception for ME, but we were told it was not an option.)

So yes NICE applies here.

 

While I am on high alert for this becoming a guideline for ME/CFS that resembles the 2007 NICE guidelines, and I share @Jonathan Edwards' sentiment of "Be careful what you wish for", I don't think this particular quote definitively tells us much about the direction of the guideline. That quote could just as well lead on to saying something like, We're going to have ME/CFS specialist doctors who will lead and coordinate your care.

That would be nice, in theory. I had an appointment with a consultant last week and she asked who takes care of my ME, and was baffled when I said, "No-one." And she's right to be baffled. Someone who uses a wheelchair and has significant GI issues and needs carers should have a doctor who understands their condition.

But I haven't seen a neurologist, rheumatologist, infectious diseases or any other type of doctor who would be capable of doing anything but a horrible job. The doctors I come across who say they have a special interest in it are the most dangerous, because they have a special interest in exercise and psychiatry. Whereas I think someone with MS is well-served (or as well-served as possible) by their care being coordinated by a neurologist and MS specialist nurse, for example. They still have to be referred on to urology, speech & language therapy and other areas as necessary. But there is a medical team (and wider MDT) that knows their case well, and that is very helpful when something goes wrong and they end up in hospital.

There are real problems that need to be solved, particularly at the more severe end of ME/CFS. For example, I should have had a powerchair years ago. That's the kind of thing that isn't missed when someone has a proper team. And the immense difficulties people with severe, and particularly very severe, ME have when they need to go to hospital.

The risk of having a guideline developed is that the process of being shunted towards psychiatry, exercise and CBT is made more efficient. But it's also possible that protective guidelines would be put in place that would prevent people with severe/very severe ME/CFS being not-fed to death, and people would be linked in quicker with helpful services like having their blood tests at home, and people would be seen by occupational therapy for assessment of what they need in terms of mobility aids, equipment to help showering etc.