United Kingdom: News from Forward-ME Group

Thank you so much @MBailey

 

In Wales we could really use a sound critique of the Dysregulation theory. We have been objecting to its use in the new post viral services (for ME, CFS PVFS, & LC) that are being developed. We have been desperate enough to speak out publicly against one service, after our offer of co-production was refused twice. https://wames.org.uk/cms-english/cwm-taf-uhb-primary-fatigue-service We are not scientists and my cognitive abilities fluctuate, so we need more info. I agree an alternative service model is also needed. While the physios for ME book is really useful, a NICE based template would fill a gap and is the only thing that mght be seen as a valid rival to BACME. Jan

 

There are two problems with the NICE guideline. One is that it does not intend to cover service provision, just treatment modalities. The other is that it caved in and di make some recommendations for service provision that aren't very good. Charles Shepherd wanted consultant led clinics. That was not written in. The bit about multidisciplinary teams is meaningless.

If you want a sensible 'template' I think it has to be created from scratch. I am happy to try to help with all these things but I am not very good at organisational things.

 

Just a reminder, or for those that had missed it: I wrote about BACME and the dysregulation 'model' here: https://domsalisbury.github.io/mecfs/bacme_dysregulation/

 

'I hope the here's one we did earlier, released soon might be useful'
Servic3 proposed provision, 2 years in the making...... now resting with the ICB under April 2022 Health Act.