Lectures from a seminar by the Norwegian ME Association with Lucinda Bateman, Jelstad, Caroline Kingdon, Schei/Sommerfelt and Ingrid G. Rekeland

[Kalliope]

The Norwegian ME Association has shared lectures from a recent seminar:

Lucinda Bateman: ME/CFS Clinical Coalition Guidelines: Informing Assessment and Management

Jørgen Jelstad on the NICE guidelines (in Norwegian)

Caroline Kingdon: What should implementation of the 2021 NICE Guideline mean for people with ME/CFS?

Schei/Sommerfelt on how to assess level of functionality in adolescents (in Norwegian)

Ingrid Gurvin Rekeland on how to map activity in clinical trials (in Norwegian)

https://www.me-foreningen.no/2022/11/29/videoene-fra-me-foreningens-fagdag-2022/

 

[Sly Saint]

Caroline Kingdon: What should implementation of the 2021 NICE Guideline mean for people with ME/CFS?

How will the 2021 NICE Guideline impact people with ME/CFS?

 

[Ravn]

This presentation is bad, it gets a lot of details wrong and it really doesn't fill me with confidence. Why is it the meassociation thought this was a good presentation rather than something to be criticised?

Did we watch the same video?

In the one I watched (in post #2) Caroline Kingdon explains how the NICE guidelines were developed and what the key recommendations are. She acknowledges the poor treatment of pwME to date and outlines what should be happening based on the new guidelines.

That the guidelines aren't perfect isn't her fault, nor is the fact that the guidelines still haven't been implemented in many places and that the reality on the ground remains grim for many.

For those of us who have followed the whole NICE saga there's little new in this presentation. However, for anyone unfamiliar with the guidelines this is an excellent introductory video I'd be very happy to recommend.

From everything I've heard from Caroline, in this video and others, she has a deep knowledge of ME including severe ME and communicates this knowledge clearly, with compassion and in a manner that is likely to get many medical professionals onside (apart from certain ideologues but then nothing and nobody is going to shift their views on us).

 

[Andy]

From everything I've heard from Caroline, in this video and others, she has a deep knowledge of ME including severe ME and communicates this knowledge clearly, with compassion and in a manner that is likely to get many medical professionals onside (apart from certain ideologues but then nothing and nobody is going to shift their views on us).

I can confirm this from having met her multiple times when working with the ME/CFS Biobank team.