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

[Andy]

Description
ME/CFS - leading edge research and its implications for medical professionals.

50 years ago, in 1969, the World Health Organisation has classified Myalgic Encephalomyelitis/post viral fatigue syndrome as a neurological illness, not a psychological disorder. A perception has more recently existed that the illness is just 'chronic fatigue' or 'extreme tiredness.'

This educational conference is designed for all NHS healthcare providers, decision makers, university lecturers, researchers, medical and healthcare students, teaching staff, benefits agency representatives and service users, and is aimed to compliment the development of the new regional specialist Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) service.

5.00pm - 5.45pm Registration & Buffet (Titles of presentations to follow)

5.45pm - 6.00pm Hope 4 ME & Fibro N.I.

6.00pm - 6.40pm Brian Hughes

6.40pm - 7.30pm Caroline Kingdon

7.30pm - 8.30pm David Systron

8.30pm - 9.00pm Q & A Session

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

 

[obeat]

@Snow Leopard see above

 

[Sly Saint]

how did this go?
@JoanNI

 

[obeat]

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.

 

[Trish]

Was it filmed? Sounds like it was very worthwhile.

 

[It's M.E. Linda]

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!)

 

[Binkie4]

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.

 

[Sly Saint]

Human Factors in ME/CFS research
By Brian Hughes on September 4, 2019
Boom!

The full title of my presentation is Off the PACE and not NICE: Challenges with Evidence in ME/CFS.

(I tweaked that subtitle a couple of times. For reasons.)

I plan to look at the nature of research error as it affects medical and healthcare research more broadly, and — of course — research into ME/chronic fatigue syndrome more specifically. Let’s just say that there is plenty of material to discuss.

Other speakers at the event include Caroline Kingdon of the London School of Hygiene and Tropical Medicine, and David Systrom of Brigham & Womens Hospital, Boston, and Harvard Medical School, who is the keynote.

As always, the organisational efforts of Hope 4 ME & Fibro NI, led by the unstoppable Joan McParland, have been hugely impressive.

Proceedings will be recorded so stay tuned for a video in due course…

looking forward to watching this when the video is out

 

[Binkie4]

Great title -

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

 

[Keela Too]

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.

 

[obeat]

A taster!

 

[adambeyoncelowe]

A taster!View attachment 8367 View attachment 8368 View attachment 8368

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

 

[obeat]

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

It will be in the DVD / USB.

 

[Sly Saint]

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

 

[obeat]

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?

 

[JoanNI]

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

 

[Sly Saint]

 

[obeat]

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.

 

[obeat]

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.