Care and Support Plan template free to download, Action for ME

agreed!

 

where Goudsmit says she got her initial concept of 'pacing'.

 

I’m ditching “pacing” it implies you are steadily rationing something. The something is energy and I don’t have it.

Energy and symptom management from now on.

 

I would be very pleased to add my name to your letter @Trish.

 

And me.

 

Please add my name

 

Posted by AFME this morning
Perhaps gives insight into the background and reality of things

" We are very grateful for all the feedback shared about how this resource could be improved and also, how it has already been a useful resource for many.


s stated in the resource itself, we developed the template whilst working closely with people living with ME/CFS and are particularly grateful to the group of patients at North Bristol NHS Trust’s Bristol M.E. Service, who adapted the ‘This is ME’ guide to make it into a longer Care and Support Plan.

Ideally, an assessment by an experienced doctor would inform the development of any care and support plan. However, we also know that, from the thousands of calls and emails we respond to each year, that many people with ME/CFS don’t have access to an experienced clinician. This resource therefore aims to help people self-advocate for their needs; a right that is supported by the NICE guideline and the NHS constitution.

https://www.gov.uk/government/publi...-for-england/the-nhs-constitution-for-england"

 

Please add my name

 

JUst read this blog post: I don't feel like I'm getting much... - Anna / M.E. myself and I | Facebook

and it is brilliant at making a similar point, but better - at underlining how unhealthy the paradigm that some clinics were giving out in the past can be

 

I don't want a group of patients at the Bristol North Clinic speaking for me. Surely it was leaflets for patients written by the North Bristol Clinic that AFME used to send out to patients until relatively recently ( a few years ago, but not that long) that still recommended CBT and GET.

 

I have rather cheekily posted the MEAction clinic review of 2019 in which Bristol didn't come out too well in reply to this post . Someone will no doubt respond that thiing have changed - from the template it would seem not.

There seems to be a real effort at embedding a paradigm that should be being discarded. Sadly our charities don't seem to have much of a clue.