Wednesday, January 24, 2018

Call for Change: Fibromyalgia and Myalgic Encephalomyelitis (M.E)

Today is a hugely significant day for all us us living with M.E. and/or Fibromyalgia in Ireland.

A small group of amazing advocates for both these illnesses have organised an Awareness and Educational event at  Leinster House (our Government buildings):

Call for Change: Fibromyalgia and Myalgic Encephalomyelitis (M.E.)

This is an abstract of the letter that went out to all our politicians:

In Ireland Fibromyalgia is estimated to affect between 90,000 and 180,000 people while Myalgic Encephaloymelitis (M.E.) affects approx. 12,000 to 14,000 with no clear pathway to care, or the necessary supports to enable patients to live independently in the community.  There is no education about M.E. among medical professionals and no specialist facilities or treatments. This large cohort of patients and voters are left in the dark with nowhere to turn, abandoned by the HSE. 

These patients are at a monumental disadvantage by having a chronic illness that falls between the cracks of HSE knowledge and services that require those with M.E. to negotiate an additional hurdle to the usual challenges faced by those living with a disability applying for essential supports, as we wait for the UNCRPD to be ratified.

I am honoured to be part of this group of 6 women who have worked way beyond their own levels of wellbeing in order to make this happen. 
We are all ill. 
We have not met in person. 
All the communication was done via Facebook's messenger.
Presentations were written, shared, checked, amended.
Flyers were designed, rewritten, printed.
Badges created.
MEAI logo designed, email address set up.
All relevent information copied, printed and collated.
A huge amount of work, especially when energy is at a premium.

I won't be at the meeting myself today. I am certainly there is spirit!
And MEme is representing me.

I will profile some of the advocates here at an other time. And will update any information when I have it.

For now, please, please tune your focus onto the event of today. 
And channel your energies to the speakers. 
They need it. 
Use your psychic power to bring your attention to the politicians, 
and make sure they are tuned in. 
That they will listen.
And ACT.

We need our voiced heard.
Changes need to be made.
We deserve a health system which supports us.
Which listens to us.
Which does not disregard us

Badge for the 'Call for Change: Fibromyalgia
and Myalgic Encephalomyelitis (M.E)' meeting today

 FibroIreland  (Fibro Ireland)
Badge for the 'Call for Change: Fibromyalgia
and Myalgic Encephalomyelitis (M.E)' meeting today

1 comment:

Corina Duyn said...

Here is a ink to the recording of the talks: