United Kingdom: News from Forward-ME Group

[MEMarge]

@MEMarge - apologies for the delay in getting these to you, we've been rather busy the last couple of weeks with all the various things going on, so thanks @PeterW for the nudge!

Attached are Denise’s notes made during the BACME conference and these were presented to Forward-ME for discussion.
Please note these are not formatted or presented in a way that was for public dissemination and are provided here raw and unfiltered. (Note - I have made 2 edits to remove personal information that could identify patients).

Needless to say MEAction UK have continued serious concerns over both BACME and their involvement with Forward-ME. Following a decision by some members, for Forward-ME to work closer with BACME, MEAction UK withdrew from the group.

Thank you so much @MBailey

 

[WAMES enquiries]

Vikki McKeever raises the point of inadequate medical input to services which seems good. I agree that the use of a dysregulation model as a 'basis for therapy' is worrying. The only basis for therapies when we actually have some will be reliable evidence, not any form of theory.

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

 

[NelliePledge]

Welcome to the forum @WAMES enquiries I hope someone here might be able to help point you towards some useful material on “dysregulation” to counter BACME

 

[Jonathan Edwards]

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.

 

[InitialConditions]

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/

 

[Suffolkres]

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.

'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.