Monday, 7 July 2014

Update on "Adopt CCC for ME" petition

The "Fully Adopt CCC for ME in Northern Ireland" Petition, initiated by the Newry and Mourne ME Fibromyalgia Support Group, was presented to the Speaker of the Northern Ireland Assembly at Stormont, on Monday 30th June 2014 by MLA Mr. Dominic Bradley.

A file of background material was included alongside the petition statement, including amongst other information, the official reply to questions that the group had put to Northern Medical and Dental Training Agency concerning the amount of time, and content of training, which GPs receive on M.E. and Fibromyalgia.

Joan McParland, May Patton, and Martina Marks, from the Newry and Mourne ME Fibromyalgia Support Group, with Mr Dominic Bradley MLA outside Stormont.

Thanks to Horace Reid for the photographs.

MLAs Joanne Dobson (Now UU Health Spokesman) and Mickey Brady also supported the petition and paused for a photo....

As did MLAs Jim Wells and Pat Ramsey.

Below, the moment the petition signatures, the letters of support and the file of supporting material was handed to Mr Dominic Bradley ready for official presentation.

The Newry and Mourne ME Fibromyalgia Support Group were delighted with the extent of support for their initiative, and the comments below were made by Mrs. Joan McParland as she thanked Mr Bradley and reported events to the group: 
Thank you to MLA, Mr. Dominic Bradley for presenting this petition to the speaker of the Northern Ireland Assembly. 
The speaker will officially forward to the Minister of Health for Northern Ireland, The Department of Public Health and Safety and The Chair of The N.I. Health Committee to consider the evidence of urgent need and to implement the full adoption of The Canadian Consensus Criteria for all diagnoses and research purposes. 
This document would provide clinicians and all health providers an opportunity to offer patients a more accurate diagnoses and bring a better understanding and acceptance of the seriousness and debilitating symptoms suffered by M.E. (Myalgic Encephalomyelitis) and Fibromyalgia patients.  
Included in the folder we added solid written evidence on the current situation of disbelief, gross misdiagnoses due to the lack of medicinal professional's training and total lack of SPECIALIST NHS services in N.I. The urgent need of care for the most severely affected and children has also been highlighted. 
The M.E. patient population have been dismissed, neglected and indeed sometimes abused for too long and we will no longer be fobbed off with the offer of GET and CBT being delivered by non specialist professionals who wrongly believe they can 'REHABILITATE' patients back to full health. 
The current Northern Trust 12 week pilot scheme offering SEVERE M.E. patients a possible return to previous employment is nothing short of ludicrous!
The video clip below records the momentous event.

And in the same week the Newry and Mourne ME Fibromyalgia Support Group also achieved charitable status.  Things must surely be looking up for ME and Fibro sufferers in Northern Ireland!

Finally, it just remains for me to give A VERY BIG THANK YOU on behalf of the group, to everyone who supported us with this venture.  Together we can hopefully bring about big changes for the treatment and outlook of ME and Fibromyalgia patients world over.  Thank you all.


Link to previous post on the Petition:
Adopt CCC - Initiative by Newry & Mourne ME/FMS Support Group

PS I am Vice Secretary of the Newry and ME Fibromyalgia Support Group

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