TDs & Senator at M.E. Visibility Protest, 10th May 2018

There was great interest and some promises made by a few Government Reps, who attended the 2018 Millions Missing Visibility Event on May 10th outside Leinster House, Kildare Street, Dublin, to help further the cause of ME patients in Ireland. 

1. Roisin Shortall TD Soc Dems with Noreen Murphy (MEAI)
 in front of the M.E. patients' Info Tag display

Those who came out and talked with us: 

Gino Kenny -PBP
Roisin Shortall -Soc Dems
Catherine Murphy -Soc Dems
John Lahart -FF
Robert Troy -FF
Michael Harty - Ind
Seán Barrett -FG
Thomas Pringle -Ind
Joan Collins - Ind
AnneMarie Mc Nally -Soc Dems
Michelle Mulherin Senator (former FG TD)
Eamon Scanlon - FF
Peter Burke -FG
Billy Kelliher -FF

Richard Boyd Barrett -PBP

Eamonn Scanlon TD (FF), Thomas Pringle TD (Ind) and Senator Michelle Mulherin were very supportive attending the event. They listened to ME Advocates Ireland (MEAI) members and attendees talk about M.E. issues and the deliberate neglect of M.E. patients by the HSE. All want to stay in touch. Senator Mulherrin said she will do her best to raise M.E. with the Oireachtas Health Committee.

John Lahart TD (FF) who also attended the event and showed support chatting to M.E. patients, their carers and families, has recently written to say that he has placed a number of Parliamentary Questions on the issue of M.E., and has written directly to the chair of the Oireachtas Health Committee, Michael Harty TD (Ind), requesting a meeting of the committee with ME Advocates Ireland (MEAI). As soon as he has a response he will be back in touch. 
He showed a lot of interest in Severe M.E. patient Noreen Murphy (MEAI) and had a lengthy chat with her and some of her extended family who were present.

Gino Kenny TD (PBP)  who attended the Millions Missing Visibility event gave much of his time talking to many attendees. He also talked to Noreen Murphy (MEAI member, Severe M.E. patient and advocate) at her car outside Leinster House where she had to lie down after she deteriorated from sitting upright in her mobility chair and from the effort of taking part in the event. He remembered her speech about her Severe M.E. that was read out by M.E. patient-advocate Moira Dillon (MEAI) in the AV Room in Leinster House in January, and he was very happy to meet her face to face. He said that he was doing all that he could to help M.E. patients. Many thanks to Gino for your continual support and efforts made in Dail Eireann on behalf of M.E. patients. 

Noreen was full of praise for her local TDs Peter Burke (FG) and Robert Troy (FF) who she said offered support and a listening ear during the protest. First out to Noreen was Robert Troy who tried to do what he could do in the Dail to get some assurance from Health Minister Simon Harris while the protest was taking place outside. He came back out to say he hadn't got anywhere but we are grateful to him for making the effort.

Many many thanks to the unwavering support of Roisin Shortall TD, Catherine Murphy TD, Annemarie Mc Nally TD and Michael Caul (MyNameis Campaign), all members of the Social Democrats Party, who attended the Visibility Protest and listened to patient-advocates talk about the M.E. issues in Ireland that need to be urgently resolved. We are grateful to them all for attending and also for providing attendees with use of the facilities at the Social Democrats office nearby.

Other TDs e.g. Richard Boyd Barrett (PBP), who were busy with party photo-calls for the upcoming Repeal Referendum, made it their business to say hello and listen to some attendees. 

Overall there was a reasonably good attendance by Government Reps at the Visibility Protest. 
Those who responded to email invitations from the hosts, ME Advocates Ireland (MEAI), and many M.E. patient-constituents to come out to meet attendees, showed good interest and hung around chatting and gave of their time. 
Attendance at the Visibility Protest may have been better if Government Representatives had not been so busy with both Repeal Referendum and the Cervical Check Scandal, etc in Leinster House on the day.

2. Noreen Murphy (MEAI)  & family with John Lahart TD FF
putting on blue ribbons provided by Noreen's grandsons for M.E. Awareness

3. Joan Byrne (MEAI) chatting with Joan Collins  TD Independent 

4. Gino Kenny PBP TD with Camilla Cruise (MEAI) and her dad 

5. Michelle Mulherin Senator with Noreen Murphy (MEAI)

6. Seán Barrett TD FG with Marian Flynn, Camilla Cruise (MEAI)
& Gino Kenny TD PBP

7. Joan Byrne (MEAI)  with Roisin Shortall TD Soc Dems 

8. Thomas Pringle TD Independent with Christine Fenton (MEAI)

• More images of the event can be viewed HERE 

9. Alan Robertson (right) and other visibility event supporter (left)
with Richard Boyd Barrett TD PBP in background

11. Christine Fenton (MEAI), Joan Byrne (MEAI) with Joan Collins TD 

We urge all TD's to take a note of the UK Members of Parliament debate on Myalgic Encephalomyelitis (M.E.): Treatment and Research in Westminster Hall, London, on Thursday June 21^st,  2018

There is an urgent need for the Irish Government and HSE to:

• 1) commit to a date to have similar talks about the situation of ME patients. 

• 2)  to agree a way forward with no further delay

• 3) ‘change the conversation’ about ME in Ireland

12. Joan Byrne (MEAI), Michael Harty TD Ind and chair
of the Oireachtas Health Committee, & Moira Dillon (MEAI) Gino Kenny TD PBP
in background talking to Noreen Murphy (MEAI)
 as she rests at her car having deteriorated.

A snapshot of the M.E. Visibility Protest in Dublin 2018

A few of the images of the M.E. Visibility Protest which was held outside Leinster House on the 10th May 2018.

Read a brief account of it HERE.

And please scroll through the other posts on this ME Advocates Blog 

to read more about the event,  podcasts, news paper arrticles, the fight for recognition, 

personal stories and the way we think change should happen.

 

            

            

   

  

  

            

  

See more images on our Instagram Page 

The situation of Myalgic Encephalomyelitis Patients in Ireland - A Summary

 Let's Talk about 

Myalgic Encephalomyelitis

(ME)

1 National M.E. Policy- adopt ICC

2. Appoint a consultant

3. Train Health Professionals

4. Include M.E. in all training of GP's Nurses and Social Care

5. Create clear Clinical Pathways

The situation of Myalgic Encephalomyelitis Patients in Ireland

Summary

•        ME  is an acquired, complex, neurological disorder affecting multiple body systems. It is classified by the WHO in their International Classification of Diseases as Neurological (under code G.93.3) since 1969

•   Despite what the public are led to believe, it is not difficult to diagnose. The International Consensus Criteria 2011 is a comprehensive diagnostic tool for medical professionals and was developed by world experts with a combined total of 400 years treating over 50,000 patients with ME throughout the world

•        Common symptoms include headaches, bone and muscle pain, swollen lymph nodes, muscle weakness, muscle spasms, seizures, neck pain, vision abnormalities, cognitive impairment, photo sensitivity, noise sensitivity, paraesthesia, bladder and bowel dysfunction, digestive dysfunction, sleep dysfunction, cardiovascular abnormalities, etc

•      The body’s ability to generate and produce energy at a cellular level is seriously impaired, meaning systems and organs cannot function properly, causing progressive systemic deterioration

•        Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal system of ME Essentially this means that any action – physical, cognitive, emotional, social – which demands energy from the body will impact on the patient’s condition, causing a marked worsening of all symptoms which can last for days, weeks or months – sometimes even causing a permanent, non-recoverable relapse.

•      Many people with ME are dependent on carers to meet their basic needs for food and personal care

•      ME is a spectrum disease and those at the very severe end cannot eat or swallow, cannot toilet themselves, cannot speak, are paralysed and living in excruciating pain with a myriad of complex systems

•       People with ME have compromised immune systems, leaving them open to opportunistic infections and other pathogens. There is a high rate of cancer amongst patients.

•       Deaths among the ME population are rarely attributed to their ME but more usually attributed to secondary causes such as cancers, cardiac issues and, in many cases, suicide. Many ME patients throughout the world have taken their own lives because they simply cannot live with the neglect of this condition and the lack of hope on the horizon

•        Life expectancy is shortened as systemic deterioration becomes cumulative

•       There are an estimated 9,000 to 18,000 people living with Myalgic Encephalomyelitis in Ireland. These figures are based on extrapolating from data in other countries. There is no collation of data on numbers with the condition here in Ireland

•        People with ME in Ireland are often left to rot in darkened bedrooms because their doctors do not understand or ‘believe’ in ME.  

•        There are NO ME specialist hospital consultants within the HSE

•        The HSE have failed to put in place clear diagnostic criteria and appropriate careplan pathways for people with ME in Ireland

•        The Royal Academy of Medicine in Ireland concluded in a published paper on ME in September 2010 “There is a need for further education of the medical profession on this debilitating condition and there is clearly a need for further research into treatment which directly impacts upon the quality of sufferers”. Eight years later, this is still the case. Nothing has changed.

•        Children as young as four years of age have been diagnosed with ME There are older young people ‘stuck’ in the Irish paediatric hospital system because there are no appropriate adult hospital services to refer them on to.

Millions Missing M.E. Awareness Event in Dublin - Get involved!

If we want to be heard, we need to be seen

#MillionsMissing Ireland will be taking place on  

May 10th from 11:30am to 2:30pm  

outside Leinster House on Kildare Street, Dublin 2.

Please use #

Facebook: #call4changeME 

Twitter: #call4changeME

This event is for everyone with ME, to highlight the need for health equality etc.

*Please note that although most other Millions Missing events around the world will take place on May 12th, International ME Awareness Day, May 10th has been chosen for our Dublin event because Leinster House will be occupied by TDs and other Gov reps then, unlike on the 12th, a Saturday when they are not present.

The bigger and louder we are, the better! 

So if you cannot attend perhaps a family member, 

friend, or carer, etc, might attend or pop by to say hello at any time.

This event is for everyone with M.E., 

to highlight the need for health equality etc. 

if you are a friend or loved one to someone affected by M.E. or, 
indeed, if you simply are the type of person 
that cares passionately about the neglect of others 
please pop by to show your support

What can you do?

• Write to your TD or Senator.  See HERE for details and draft letter.

• Create a Tag for display at the event. See HERE for details

• Invite your family or friends to create tags on your behalf.

• Share the M.E. Advocates Blog or social or printed media. A Blog which is full of stories and information about life in Ireland for those living with M.E.

• Write your story and email it to Corina. She will edit (if required) and add it to this Blog. Even a few words are welcome.

• Contact your local paper, or radio station.

• Join in on the actual event. Write about it on your social media pages -  Tell your friends an family. Facebook: #call4changeME  Twitter: #call4changeME

• Share the #MillionsMissing Visibility Action: Dublin, Republic of Ireland

• Connect on 
• Instagram
• Twitter
• Facebook 

• or if you are a friend or loved one to someone affected by M.E. or, indeed, if you simply are the type of person that cares passionately about the neglect of others and wants to pop by to show your support

M.E. MillionsMissing Event in Dublin

#MillionsMissing is a global campaign for M.E. health equality. 

Help us make noise on May 10th, 2018 by joining our Visibility Action in Dublin!

Image from Millions Missing Protest
11th May 2017

• For directions, and to add your name if you are attending click HERE

On May 10th, M.E. Advocates Ireland (MEAI) will host the second Dublin #MillionsMissing event in front of Irish Government Buildings. 

M.E. patients, carers, advocates, family and friends will gather at 11:30 AM until 2:30 PM in front of Leinster House, Kildare Street, to raise awareness and demand health equality for the Millions Missing because of Myalgic Encephalomyelitis (M.E.), and to highlight the total lack of appropriate medical and support services for people with M.E. in Ireland.

Information Tag Display -
We are creating an information display this year which will include Information Tags from people with M.E.

To involve as many people with M.E. as possible in this year’s event, the organisers have invited people with M.E., or their carers, to send us an Information Tag - a brief piece of information about you and your illness, or about the person you are caring for, and a photo too.

The Information Tag will be displayed for others to read at the Dublin Millions Missing event, e.g. Government Representatives, attendees, and passers-by. 

The Information Tags will represent all M.E. patients, especially those who cannot attend the event. The more representation of the M.E. community we have on display the better.

This visibility action is part of a worldwide event to coincide with World M.E. Day.

Afterwards we will post pictures of this Visibility Action on social media along with others from around the world to inundate social media and demonstrate the mass collective action for ME health equality!

• M.E. Information Pack 

Create your Information Tag for Irish Millions Missing Event in Dublin

Even if you are unable 
to physically be at the Millions Missing 
M.E. Awareness Event in Dublin, 
you can be still be represented
and make your voices heard
via our Information Display.

Please send an Information Tag
with some details about yourself 
(or your sister, mother, brother, parent, friend, etc. who lives with M.E.)
 and a photo 

to be displayed 
at the Millions Missing Dublin event 

May 10th, 2018. 

• We are creating an information display this year instead of the empty shoes display.

• To involve as many people with M.E. as possible in this year’s event, the organisers would like to invite people with M.E., or their carers, to send us an Information Tag - a brief piece of information about you and your illness, or about the person you are caring for, and a photo too.

• Your Information Tag will be displayed for others to read at the Dublin Millions Missing event, e.g. TDs, attendees, and passers-by. 

• The Information Tag will represent you if you cannot attend the event. If you are planning to be there you may also wish to be involved in this idea. The more representation of the M.E. community we have on display the better.

*******************************************************************

How to make the Information Tag: 

• We would like you or the carer to write a brief piece about yourself or the person with M.E. on an A5 sheet of paper, e.g. name, how long ill, what is missed in life, what difficulties you face having M.E., what changes you would like to see in healthcare, etc. There won’t be a lot of space on an A5 page so please be brief.

A5 size is half A4 size and the dimensions are 5.8" wide by 8.3" long. The tag will be hung in portrait orientation (longways).

• We encourage you to attach a photo of yourself above or below your information piece, as shown in the images. The photo can be any photo you have that you don’t mind giving away. You can send a photo that best represents how unwell you are. Photos like this would best represent the M.E community but are not necessary if you are unable to provide one. An old photo will do.

• The brief piece of information and photo must fit on an A5 page, as shown in the images attached. (A5 is half A4 and is 5.8inches wide by 8.3 inches long)

• Please leave some space around your information piece and photo on the A5 page, as shown in the image saying 'don't write here' on the border spaces, so that we can punch holes and add ribbon for display purposes. (We don’t want to put holes through any of your work!)

• You may hand write your information or type it up, as shown, whatever you like or whatever you are able to do is fine. Writing must be clear so that others can read it.

• Please add the hashtag #millionsmissing somewhere on the page as shown.

• We would like to have all the Information Tags laminated to protect them against any bad weather, and to have them looking well on the display board, so if you can go that one extra step further and can laminate your tag please do.

• Post your completed A5 Information Tag for this year's Millions Missing Dublin event to the following address: -

Millions Missing 

C/o 10 Springvale, 
Rathfarnham, 
Dublin 16.

or email to info@meadvocatesireland.com

******************************************************************************

NB: For anyone who can’t make their own tag we encourage you to get a family member, friend, or carer to make one for you so that you can be represented at the Millions Missing event in Dublin. If you don’t have that kind of help and would like a tag made for you, please let us know.