Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

NelliePledge said:
Apparently someone at the NICE event has made some kind of commitment to remove the restrictions on testing eg in this case for B12 deficiency.
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I was at that table. All that was said was that such concerns would be considered. The person from NICE running the discussion was not in a position to make any commitment abut what the committee-to-be would decide - obviously.
 
I attended the NICE Engagement and I also brought up things like Vit B12, FII accusations, Bedbound not being take seriously or understood in any meaningful way, having no visits from medical staff; so therefore we have no real understanding of severe. We need a severity scale in order to understand progression of illness good or bad.

Testing for Lymes disease
How children are treated and how NICE should take the way the Guidelines are interpreted as their concern, they make them they should protect them?

How the different names have been used to abuse and confuse, so we are now in a position of not knowing much at all because it is so mixed up.

That the most important part of all this is how PEM is not understood. Once an understanding of PEM; the delay and how it impacts on body and life then we can start to help those that suffer. All doctors should recognise and treat this with the utmost respect. Any form of post viral symptoms should be treated with caution.

Heart Rate monitors and how these can be used. They are listed in the guidelines and yet no one uses them, why?

I am in the process of writing to them with my thoughts, and will also be attaching my complaint that I have compiled for Dr Myhil.

I have done a blog on Tilly Moments and go easy on me, I am only a mum :banghead:

http://tillymoments.blogspot.co.uk/
 
Skycloud said:
I don't believe in "I am only a mum" :). Thanks for posting the link to your blog - it's great to have feedback from another perspective.

Also, a warm welcome to the forums!


If you'd like to you can post a little about yourself here: https://www.s4me.info/forums/introduce-yourself.18/
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Thank you for the warm welcome's and good to meet you all.

I have now managed to put an introduction on.

I don't believe in "I am only a mum" and am always shocked when people assume this. But I am proud to be one and it makes me giggle when they assume, little do they know I think to myself. :)
 
Sorry if this has been shared on the forum earlier, but couldn't find anything.

The ME Association: NICE Announces next steps in updating its guideline on ME/CFS

Professor Mark Baker, director of the NICE centre for guidelines:
The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.http://www.meassociation.org.uk/201...ing-its-guideline-on-me-cfs-16-february-2018/
 
Kalliope said:
Sorry if this has been shared on the forum earlier, but couldn't find anything.

The ME Association: NICE Announces next steps in updating its guideline on ME/CFS

Professor Mark Baker, director of the NICE centre for guidelines:
The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.
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https://www.s4me.info/threads/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs.2443/
 
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