Hope 4 ME & Fibro Northern Ireland event (Wed 4th September 2019): New Frontiers in M.E. -Transforming Patient Safety & Care

https://www.eventbrite.co.uk/e/new-...rming-patient-safety-care-tickets-58827518692

 

@Snow Leopard see above

 

how did this go?
@JoanNI

 

I think Joan is still recovering. I am too ill to attend but my sisters said it was excellent. A health commissioner said he finally understood the problem with GET.
Caroline Kingdom gave a wise, compassionate lecture on SevereME.

We'll add more later.

 

Really looking forward to a report when @obeat and @JoanNI (and all other Hope4ME volunteers ) are feeling able to think again.

Thank you, in advance, for all the hard work, before, during and after this major event. (Wish I was close enough to be able to attend!)

 

Also interested in David Systrom’s talk. Did he come over to UK especially for this presentation?
Hope that Nice looks at all of these.
Once again thank you to the organisers.

 

https://twitter.com/user/status/1169188595070054400

looking forward to watching this when the video is out

 

Great title -

“Off the Pace and not Nice-Challenges with Evidence in Me/CFS”.

 

I understand the event was professionally videoed. Sadly I couldn’t be there, but I’m looking forward to the release of the DVD in due course.

 

A taster!

 

Do we know any more about the iCPET phenotypes mentioned here?

 

It will be in the DVD / USB.

 

https://twitter.com/user/status/1171091837504954370


thread here:
https://www.s4me.info/threads/fundr...llowing-medical-encounters.10770/#post-191438

 

https://www.alphavideoireland.com/shop/

DVD,USB and Blue ray available.

We do have to charge to cover the costs of the conference.
The video producer makes no profit.

@Andy Can you bump this please?

 

Still in recovery so briefly
David Systrom is an extremely helpful gent, nothing was any bother no matter what we asked him to do while in N.I.
Before the presentations, I introduced him to the Chair of the Health & Social Board, Dr. Ian Clements and they chatted for ages. Dr. Clements has asked me to send him David’s slides to share with Heath Commissioner colleagues but as some were of yet unpublished work, I have to wait for the okay to do so. Expected very soon.
It’s very obvious, top Commissioners want to help us and to learn about ME but there’s a blockage somewhere preventing them from making the urgent changes necessary, probably all waiting on the outcome of NICE Review. So very frustrating
Conference summary
https://1drv.ms/w/s!Ah4780-H-Hu1lxZ-eQNREvE0A4GG

 

https://twitter.com/user/status/1179647748754362368

 

https://www.youtube.com/watch?v=0MjJ06dDjzM

For non Twitter users. Only 59 secs.
I've written to RCNCongress to suggest Caroline as a speaker for their fringe agenda and will be doing the same with local nursing schools.

 

A tip. If your charity group can organise a small bursary fund to get a health professional to a conference ,it opens doors. I wrote twice to our lead nurses about conference , no response. Then I mentioned our bursary fund and the conference was widely advertised. This helps raise awareness and now I have established important contacts.