Monday, 9 February 2015

Northern Irish Patients Rally Round.

There is a tangible feeling in Northern Ireland, that change is in the air for the treatment of ME and Fibromyalgia!

The Patient and Client Council (PCC) has recently delivered invitations, to an ME and Fibromyalgia Symposium, to medical professionals and MLAs in Northern Ireland.

To ensure a good attendance at this event, patient groups are now united behind a move to write personal letters to GPs and MLAs encouraging them to attend.

A template letter for download can be found at this link

The Symposium speakers include: 
Dr William Weir FRCP, from London 
Dr Pamela Bell, of the Pain Alliance NI. 
A video link to a UK researcher and another specialist clinician (names to be confirmed) 
Several patients, who will talk about how ME and/or Fibromyalgia impact on their lives.

Currently there are no Specialist ME services in Northern Ireland, and services for Fibromyalgia seem inconsistently offered.  It is hoped that this meeting will help to raise the profile of these two diseases and also highlight the need for a radically new approach.

Replies to the invitation are due on Tuesday 17th February, so THIS WEEK is THE WEEK to make a difference.  If you are in Northern Ireland, please support the efforts of the charities:
  • ME Support Northern Ireland, 
  • FMS/ME Awareness NI, 
  • Fibromyalgia Support Northern Ireland, and 
  • Newry and Mourne ME Fibromyalgia Support Group

You can download, and personalise a template for promoting this event here

Some patients are also personalising the letters with a hand-written cover note.  I intend to add a short note about my illness - probably something like this:
I became ill with ME on 1st March 2012.  Having previously led a very active life including: mountain walking, riding horses, and keeping a large organic garden. I am now very disabled, restricted to using a mobility scooter, and sadly I have also lost my teaching career.   
There is no specialist consultant led clinic in N.Ireland to which I can be referred, and many doctors are still working from outdated guidelines about the nature of the illness.
Please help by supporting this event.
Please, if you are at all able, help us to ensure that this event is really well attended.  

We need to make our voices are heard.  
PS This is not a patient event.  However representatives from the charities (mostly patients) and the patient speakers will be in attendance.

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