M.E. becomes visible in Ireland #MillionsMissingDublin

M.E. becomes visible in Ireland #MillionsMissingDublin

Screen Shot 2017-04-20 at 14.16.49.png

 

M.E. becomes VISIBLE for the first time in Ireland

For the first time in the Republic of Ireland, M.E. (Myalgic Encephalomyelitis) will become visible.  It is part of a global campaign called #MillionsMissing to highlight the illness and the neglect of patients.

The demonstration by M.E. patients, their families/carers is taking place outside the Dáil on Thursday, May 11th from 11am to 3pm.

For any patient unable to attend, a pair of empty shoes will be placed on the ground symbolising what they are missing because of M.E.
Examples would be:
My name is ______, I have M.E. for ____ years.  I am missing out on life with my family, missing my education, missing my children, missing out on a social life – whatever is applicable to each person.
So, the empty pair of shoes is quite an emotive and symbolic gesture.

We need all the support we can get.  If you can join us, please do.

Thanks to Corina Duyn for this fabulous poster:
Corina's #MillionsMissing Cover Photo.png

How to take part:

There are numerous ways in which to take part in the demonstration, both in reality and virtually 🙂

  • Come along to the Dáil on the day – we do need numbers.
  • If you have M.E., you can write to/email your TDs, asking them if they would come out to speak with us on the day.  A template of the letter can be supplied if you’d like.
  • If you have M.E., you can send a pair of shoes (as outlined above) with details.  I can let you have the postal address privately.  If you cannot manage to send shoes, you can let me have your details and they will be put on an empty pair of shoes for you.
  • If you have M.E., you can send a photo to Moira Dillon, who has set up the fabulous Instagram page.  Moira will “scratch” out the M.E. patient from the photo.  Give a follow to MillionsMissingDublin Instagram here:  https://www.instagram.com/millionsmissingdublin                                                Contact Moira here: https://www.facebook.com/moira.dillon.5?fref=ts
  • SHARE all the information/posts that you can, using the hashtags #MillionsMissing #MillionsMissingDublin and #ME on Social Media
  • On Twitter, use the same #hashtags and follow @MMDublin.  ReTweet any tweets that you can.
  •  For the month of May,  a #MillionsMissing filter Twibbon can be added to your Social Medial profile picture.
    https://twibbon.com/support/millionsmissing-4

It has taken a huge effort on the part of many people, the majority of them patients, to get this demonstration underway.

 

What is M.E.?

M.E. is a neurological illness, as defined by the WHO (World Health Organisation).  It is a complex, acquired illness affecting multiple systems and organs, including CNS (Central Nervous System), immune system, gastrointestinal, musculoskeletal, cardiac, etc.  It normally starts with a viral infection.
An M.E. patient’s body loses the ability to produce sufficient energy at the cellular level.
Of course, the body needs energy for all its functions.  Without this energy/power, our bodies will not grow, cannot perform the necessary tasks such as regulating heart rate, blood pressure and is needed for reproduction, growth, immune defence, cognitive function, reparation, balance, etc.

There are four levels of severity: Mild, Moderate, Severe and Very Severe.
A Mild M.E. patient can generally cope fairly well with life by learning to ‘manage’ the illness.

A Very Severe M.E. patient lives in a bed, in a darkened and silent room, unable to tolerate light, sound, touch, smell and may be tube-fed, if he/she is unable to swallow.

A patient can go from one level to another over his/her lifetime.  It may not be a static illness.  Sadly, some live in a Very Severe state for years on end.

 

Here are just SOME of the symptoms that M.E. patients live with every day:
M.E. Definition & List of Symptoms.png

In Ireland, M.E. is ignored and neglected

Here in Ireland, M.E. is not taught in Medical Schools.  Therefore, the first time a GP has to deal with it is when an M.E. patient presents at his surgery.   A referral to a neurologist yields nothing but frustration as a neurologist doesn’t know about M.E. either!  There is no M.E. specialist/consultant in this country.

Healthcare personnel, be they acute or community, are not equipped to deal with M.E. patients and their needs, as they are not taught about it either.

Ireland does not adhere to the WHO classification of M.E., even though it signed up to it.  Ireland has allowed M.E. to become conflated with “CFS” (a waste-basket diagnosis for fatigued patients or patients with fatigue as their primary symptom) and therefore Ireland is in violation of the WHO code.

Up until recently, the HSE had dangerous guidelines on its website.  Thankfully, they have been removed.  We need to ensure that correct diagnosis and guidelines are set.

To reiterate, we need all the support we can get.  If you can join us on May 11th outside the Dáil, please do.

 

 

Thursday 20th May 2017

 

 

 

 

 

 

 

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s