NICE outlines steps needed to put ME/CFS guideline into practice, May 2022

"NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into" [sic - i assume "practice" was meant to be there to finish this off.]

https://www.nice.org.uk/news/articl...-needed-to-put-me-cfs-guideline-into-practice

 

Putting the ME/CFS guideline into practice

"Today marks the first World M.E. Day and we are pleased to see National Institute of Health and Social Care Excellence (NICE) have outlined the steps needed to put the guideline for M.E./CFS into practice.

In a statement on their website, NICE says:

“Providers and other organisations should update their training for health and social care staff, including those in training, to ensure that up to date recommendations and safeguarding implications are disseminated across the health and care system.”

We have worked collaboratively with Forward-ME to ensure this guideline was led by people with M.E."

https://www.actionforme.org.uk/news/​implementing-the-nice-guideline-for-mecfs/

 

It's good to see NICE being proactive and open. They don't have to comment on this and posted several. I guess seeing the power dynamic was illuminating to some. Kudos. And good timing to have both on the same day and amplify one another. Seems like there may have been secret meetings happening that were actually on our side for once.

https://twitter.com/user/status/1524758774610862082

 

Many of the recommendations in the guideline represent a change to current practice ….!!!!!!!…...and will, due to the nature of those changes, take the NHS, education, social care and integrated care systems some time to implement. The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline.
These include:

• Commissioners should ensure the availability of experts in secondary care to provide guidance to primary care.
• Providers and other organisations should update their training for health and social care staff (including those in training) to ensure that up-to-date recommendations and safeguarding implications are disseminated across the health and social care system.
• Commissioners and providers should ensure that provision for increased access to early paediatric review for further assessment and investigation for ME/CFS is available where need is identified.
• Commissioners and providers should be aware that investment will be needed to increase the number of specialist clinics and specialists with expertise to formally diagnose ME/CFS and develop a care and support plan where need is identified.
• Commissioners should review funding and capacity in primary care, ME/CFS specialist clinics and paediatric clinics to enable the recommended appointments where need is identified.

 

NICE sets out steps NHS must take to implement ME/CFS guidelines
BMJ 2022; 377
doi: https://doi.org/10.1136/bmj.o1221
16 May 2022
Ingrid Torjesen

The National Institute for Health and Care Excellence has issued an unprecedented implementation statement1 setting out the practical steps needed for its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)2 to be implemented by the NHS.

[...]

“We will be developing our own delivery plan later this year and will be working with stakeholders to understand how we can improve experiences and outcomes for people with these debilitating conditions,” he said. “At the heart of the delivery plan will be two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.”

The BMJ asked three royal colleges for a response to the implementation statement, but none responded before publication.

 

It is another peculiar journalistic piece from BMJ. The author sounds as if they are gritting their teeth and being almost even-handed about presenting the politics because they have no alternative. The Colleges seem to have wimped out. Javid has changed the dynamics.

 

I feel the wiff of victory over adversity in the air...!

 

That article is paywalled for me but the ME Association appear to have reproduced it in full here, https://meassociation.org.uk/2022/0...-nhs-must-take-to-implement-me-cfs-guideline/