Nurses for ME

"Susan O Shea is leading the organisation of the Nurses for ME branch of the education working group. The TOR (terms of reference) would be along the same lines as the CMRC education working group and Susan has done a short summary. The idea is that stakeholders are patients and healthcare professionals (more nursing related) and the role is to inform nurses of the biomedical and patient narrative in ME/CFS. This would be via publications, nursing colleges and conferences, online learning and teaching events and also looking at what nurses are currently taught about ME/CFS.

This goes hand in hand with PR and increasing general awareness.

Study PRN do nursing CPD so a module aimed at nurses could be a useful next step."


This is from Dr Nina Muirhead. If any nurse is interested in more information about joining, please pm me and I will send you Susans email.

 

This could be good but what is the reference to the CMRC education? Involving this organization does not bring confidence in the slightest. If they even exist anymore? Seeing as they do no visible work anyway.

 

There is no visibility into what the CMRC is doing so kind of natural, before then I had seen nothing credible from them. I wasn't even aware Muirhead was involved with them, they are not exactly communicative about their work. If they are changing it's good, but a bit weird for a research funding organization to take on GP training.

Anyway if this is new-and-competent CMRC with Muirhead involved and not old CMRC this is probably good then. Progress, even. Better communication would certainly help if massive changes are happening without being visible to the outside.

 

It's not. It's hard to categorise it really, my best description is that it is an organisation that aims to provide a framework to help connect researchers and academics in the UK, and to assist them, when possible, when they seek funding from the funding bodies, in the way that that we are in the GWAS team are. To see their current initiatives, their last minutes can be read here, Thread for all minutes of the UK CFS/ME Research Collaborative [CMRC] Executive Board Meetings

 

Dr Nina Muirhead at CMRC 2020

https://www.youtube.com/watch?v=NjFKLFr8hqw

Dr Muirhead Education Module with CPD released May 2020
https://www.studyprn.com/p/chronic-fatigue-syndrome

 

Really excellent news.

I presume that if Dr Nina Muirhead is involved then, via ME Association, so too is the UK ME/CFS Biobank?

Just in case please @obeat , would you mind checking whether Susan has made contact with Caroline Kingdon?

Also, another excellent Nurse to refer to would be 2015 Nurse of the Year Finalist, Greg Crowhurst (contact via https://www.stonebird.co.uk/)

 

Hi please could I have contact information for Susan? Many thanks

 

I've sent you a private message via conversations. Thanks

 

@Graham from hospital discussion.

 

Hi there. I'm a bit slow picking up on developments lately: five trips into hospital for recurring sepsis/liver abscesses since 26th July, plus cataracts, has set me behind a bit!

I'm a member of the Sussex and Brighton Patient Educator's group, and have recently compiled a spreadsheet of possible email contacts for the 43 medical schools in the UK. I have prepared a quick reference sheet to send out to them, hoping to cash in on post-COVID concerns and recent investment in ME research (Decode ME).

I'm not expecting much to come of it, but if it opens a few cracks in doors, it will be a start. I have used Natalie's videos, Nina's course, the MEA purple booklet, and Simon McGrath's blog as key references/starting points.

I'm not sure how this links in to this initiative, but as always am open to suggestions.

My recent experiences in hospital, from the point of ME, were awful. Many hadn't heard of ME: those that had were still wedded to the ideas of the eighties. No allowance whatsoever was made for PEM: my GP was shocked by how much I had deteriorated. Two local friends with ME also went into the same hospital around that time, and they too were shocked by how little the medical staff knew: one faced open derision about her sensitivities to sound and light.

A massive change is needed, so I'm fully supportive.

 

Huge TY @Graham , I knew you would be helpful here.

just today on twitter(from sharing Natalie and Josh’s new video on Hospital Admissions), I have heard of 2 carers, extremely concerned for their SevereME loved ones, who both must attend hospital in the near future.

We cannot stress the importance of up-to-date knowledge and awareness enough for ALL medical professionals.

 

Sorry to hear you've been so ill, @Graham, and have been treated like crap in hospital. I hope you can start to make up lost ground.

 

this nurse might be interested(?)
( on twitter @sharon_222 I'm a school nurse also a #pots and #me/cfs #spoonie )

https://twitter.com/sharon_222

 

I'll let her know. Thanks

 

would I be able to get some more info please.

 

I've sent you a PM via conversations......

 

Hi is this the group that is doing the ME Hospital passport? Could someone provide me with contact details please (or if they have a public email address, post it here?).

 

@phil_in_bristol sorry to bother you but just read your post above, could you PM me too please? Or post details here? This is regarding the ME hospital passport, which Mark has posted about in another thread, but it may be difficult to get hold of him as he hasn’t posted for about 2 months since. It would be really good to get progress on the passport and if we could find out what representation for Severe and Very severe ME there is on making the passport, what’s in the passport and to post it here. There are quite a few members here on the forum who are really interested and for whom it’s really important. Since the NICE guidelines are coming out it would be good to see progress and see how it would work with that. Thanks.