Hope 4 ME & Fibro Northern Ireland annual conference, Monday 17th September 2018

Andy

Andy

Retired committee member
Attending will be Drs José Montoya, Nigel Speight and Peter Rowe.
Hope 4 ME & Fibro Northern Ireland annual conference,
MONDAY 17th SEPTEMBER at 7pm Long Gallery, Stormont Buildings, Belfast.
Admission fee is yet to be fully calculated and amount will depend on securing outside funding or sponsorship for this event. Fees will not exceed £50.
We are offering FREE places to MEDICAL STUDENTS ONLY.

PLEASE NOTE: preliminary bookings from medical professionals, all healthcare providers, academics, healthcare commissioners and members of the Northern Ireland Assembly, will be processed at this stage only, as places are limited.
Please book early as high demand is expected.

Contact: hope4mefibro@outlook.com
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Code: 
https://www.facebook.com/Hope4MEFibro/posts/1755888444469968

Facebook post
 
Just popping on to add full programme.
Still in shock, the Chief Medical Officer for N.I. is opening our event, this says a LOT I think but of little use to patients if the ME message doesn’t filter down to GPs etc.
Interesting times ahead.
 

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Hope this isn't already posted:

Source: Love Belfast

Date: August 27, 2018

URL:
https://lovebelfast.co.uk/fibromyalgia-conference-northern-ireland/

Major ME and fibromyalgia conference set for September International speakers for Belfast event
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A major conference on ME and Fibromyalgia is set for September at a time when recruitment is underway for the first ever consultant lead on the condition nears completion. Hosted by the charity, Hope 4 Me and Fibro Northern Ireland, the event on September 17 at Parliament Buildings, will hear a keynote address from US specialist Jose G Montoya MD of Stanford University.

Joan McParland, founder of Hope 4 Me and Fibro NI said this was a vital conference at a time when new NICE (National Institute for Clinical Excellence) for ME/CFS are under review and previous claims of graded exercise and cognitive behavioural therapy being beneficial for this large patient population, are now firmly discredited. 'Now that we are
moving forward in Northern Ireland this conference comes at a critical time to inform all healthcare providers of the most effective ways to manage patients and more importantly, to protect them from further deterioration. The service has, by the Health and Social Care Board's own admission, been fragmented, with delays in diagnosis and gaps in education for medical professionals.'

Dr Montayo's keynote address is entitled 'An Unfolding Story of Scientific Discoveries and Future Targeted Treatment' and will hear his experiences of treating patients and his extensive clinical research to improve diagnosis and treatment. Under Dr. Montoya's leadership, the ME/CFS Initiative has had great success in engaging and collaborating
with nearly 50 researchers across Stanford University and beyond.

Amongst other speakers are infectious diseases consultant, Dr W.R.C. Weir, producer of the award-winning documentary 'Voices from the Shadows' Natalie Boulton. Louise Skelton of the Patient Client Council will also address the conference on the importance of the patient voice.

A speaker (to be confirmed) from the Public Health Agency will provide an update on current ME services and new care pathway for fibromyalgia patients.

The September 17 event will be opened by Northern Ireland's Chief Medical Officer, Dr Michael McBride and is hosted by MLA, Robbie Butler.

Tickets are available from:

https://www.eventbrite.co.uk/e/mana...ediatric-first-do-no-harm-tickets-46131336068.

Medical students can attend at no cost and CPD accreditation from the Royal College of Physicians in London, has been applied for.
 
The press release went out before I’d received confirmation of accreditation!


Management of ME/CFS: Adult & Paediatric- ‘First Do No Harm.’ has been approved by the Federation of the Royal Colleges of Physicians of the United Kingdom for 3 category 1 (external) CPD credit(s
 
From Ian:


Local advocates here are extremely pleased regarding how last night's conference went.

The conference was opened by the Chief Medical Officer for Northern Ireland, Dr Michael McBride, which in itself was a clear demonstration of the change in attitude here towards ME by health officials. Probably the quote of the night for us was from Dr McBride who said, "No one, no patient, should have to fight for recognition of their condition. That many of you have had to do so is a matter of great regret to me." Boy have waited a very long time to hear that!

The keynote speaker was Professor Jose Montoya from Stanford University, who it was a pleasure to meet and who we thought pitched his talk just right to the invited audience, which included doctors and other health professionals, as well as local politicians. We had more health professionals attend than we have ever had at any previous conference in Northern Ireland and the Chair of the Royal College of GPs in Northern Ireland also attended.

Dr William Weir gave an excellent presentation titled "The Diagnostic Dilemma" and there was a video production by Natalie Boulton (who attended) on ME/CFS in children and young people, featuring Dr Nigel Speight and Professor Peter Rowe. I thought this was very well made and an excellent teaching resource for paediatricians on ME. It can be viewed here http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs .

Local representatives of the Patient & Client Council, who have been instrumental in helping ME advocates achieve change here, also spoke and informed the audience that interviewing of applicants for the post (part-time unfortunately, but with a promise that it will be expanded) of a regional medical clinical lead for ME/CFS starts today. We are hopeful that the right person will have applied and will be recruited and we have a representative on the interview panel, which is another demonstration of how things have changed here. We are under no illusions though and those in East Anglia know even better than us how this road is not a smooth one, but we are hopeful none the less.

Attendees at the conference were left overwhelmingly in no doubt by the speakers that ME is a physical illness and should be treated as such by the medical profession.

Joan McParland of Hope for ME & Fibromyalgia, who organised the conference (mostly from her bed) deserves to be congratulated for organising a very sucessful conference, which both educated and advanced the cause of ME in our little corner of the world. And a big thank you to Professor Jose Montoya and all who travelled to Belfast to make the conference a great success.

A video of the conference presentations will be available in the next few weeks and details will be available on the Hope for ME & Fibromyalgia website https://hope4mefibro.org/ and Facebook page at https://www.facebook.com/groups/newryandmourne.me.fms in due course.


Professor Brian Hughes of the National University of Galway, Ireland attended and tweeted live from the conference and his tweets with pictures can be found on his twitter feed here https://twitter.com/b_m_hughes . Professor Hughes presented Dr Michael McBride with a copy of his new book (coming out on the 21st Aug) and titled "Psychology in Crisis". Some excepts from Professor Hughes book can be viewed at the link below, see pages 132-140 re the PACE trial. First bit.ly link is a shortened link to the longer link below.

http://bit.ly/HughesB-Psycology-in-Crisis

https://books.google.fr/books?id=Ck...ogy in crisis brian hughes pace trial&f=false


Ian
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That sounds like it was absolutely fantastic. Very well done to the organisers. I hope it will mean that pwME in Northern Ireland get better treatment and support very soon - and that the word will spread beyond NI.
 
Trish said:
That sounds like it was absolutely fantastic. Very well done to the organisers. I hope it will mean that pwME in Northern Ireland get better treatment and support very soon - and that the word will spread beyond NI.
Click to expand...

Hopefully someone (can't remember her S4ME "name") will pass this on to Carol Monaghan.

Above is a very useful summary, to be used with our own constituent MPs. I wonder if it would be good as a handout/reference at the GP conference in Glasgow.
 
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