Friday 18 May 2018

From us to you, thank you for being at the ME Visibility Event May 2018

Thursday's ME Visibility Event May 10th happened and the much planned for event outside Leinster House was a great success. 

Those of us who could be there on the day, were there. And even some who really shouldn’t have pushed themselves to be there, did so. And they did so because they have passion and compassion for their fellow patients, belief in the fact that this illness can be helped enormously if only healthcare professionals took the time to get educated about it and because they truly care about patients with ME here in Ireland.

It wasn’t easy organising everything especially when there were days when some of us were just too ill to be even online. There were posters to be organized, tags to be made, frames to be built, press to be contacted, TDs to be contacted, promotions to be followed up, printing to be arranged, T-shirt’s to be ordered, nails to be done, lifts to be arranged, much begging of friends and family to help on the day, etc etc etc. The list goes on. 

But we did it and we did it with you. 

If you sent us your tag, you were there. 

If you sent us your info for a tag, you were there. 

If you turned up you were clearly there! 

For all those who couldn’t make it because they were too ill, we held the space for you. We were honoured and pleased to do it. Your story and your pictures were read by many, many people - TDs, fellow patients, friends, public and even the policemen outside Dáil Éireann. They saw you. They know you exist.

And now the follow up begins. As part of that follow up we may be asking you to recontact some of your TDs and we hope you will do that. We may be asking those who didn’t manage to get their info to us, to send it now so that we can build up a reservoir of patient numbers for any future events. 

For now we are resting. We will process all that happened, follow up with all those who committed their support and continue our ongoing work with the HSE to ensure proper medical training of healthcare professionals for patients with Myalgic Encephalomyelitis in Ireland.

From us to you, thank you for being there...

  • Article in the here

M.E. Advocates Ireland founding members
Standing: Moira Dillon, Joan Byrne,
Seated: Camilla Cruise, Noreen Murphy, Christine Fenton.
Missing are Rachel Lynch & Corina Duyn

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 

Wednesday 9 May 2018

Podcasts of Interviews by Members of ME Advocates Ireland (MEAI)

This page includes podcasts of interviews by members of 
ME Advocates Ireland (MEAI) 

Corina talks about the article about living with ME during Covid-19 restrictions as well as the two year fight with the HSE to gain proper care and PA support.

In this second interview from her bed Noreen Murphy chats with Ray Dolan to highlight M.E. in an effort to get recognition, support, care and treatment from our government, HSE and Health Minister and, of course, to get our GPs taught about M.E.  

Christine Fenton was invited to talk about ME by a local radio station in Castlebar, Co Mayo. Christine chatted on CRCfm with Angela Faull on Thursday  Jan 10th, 2019 about ME in general and about her own illness. 

A very clear interview about what M.E. is, how it affects people, especially those severely affected. Including paralyses.  And details about the ME Awareness Protest in Dublin 10th May, and why we are out there.

Interview from her bed- with Ray Dolan to highlight M.E. #MillionsMissing demonstration outside Leinster House Thursday, 10th May, from 11:30 until 2:30 in an effort to get recognition, support, care and treatment from our government, HSE and Health Minister and, of course, to get our GPs taught about M.E.

"On the show Presenters Bernadette Phillips and Stan Phillips spoke with Author Corina Duyn about the 'reality' of living with M.E. and the aftermath of travel. Also about the upcoming M.E. #MillionsMissing Event in Dublin hosted by M.E. Advocates Ireland happening on 10th May which is part of a global campaign for M.E. health and Equality." Also  8th March 2018  & November 2017 reality of M.E. and society's views on disability.

"I suddenly started losing the use of my legs, my arms...and my body stopped functioning."
Myalgic Encephalomyelitis (M.E.) patients - who experience severe, persistent debilitating illness, held a peaceful awareness protest outside Leinster House today to highlight what they claim is the utter neglect of ME patients in this country.

  • A Mullingar woman with severe ME has set up an online petition for the drug, Ampligen, to be licenced and made available to treat people with Myalgic Encephalomyelitis (ME). Noreen Murphy says the treatment is available in the US but not in Ireland. Noreen has been telling Keith Shanley on the Midlands Today Show that she has written numerous letters to the Department of Health.

The situation of Myalgic Encephalomyelitis Patients in Ireland - A Summary

 Let's Talk about 

Myalgic Encephalomyelitis


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

  •        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.

Saturday 5 May 2018

PAIN IN MY SOUL. Groundhog day as an ME patient

A graphic account by M.E. patient Camilla Cruise of the reality of dealing with the HSE.

Camilla Cruise at last year's Millions Missing Protest in Dublin

Warning by Camilla: very irate Myalgic Encephalomyelitis patient and some strong language maybe have been used. 

Yesterday I waited over 3 hours to see a rheumatologist in Beaumont hospital Dublin. 
I've waited over 3 yrs in constant increasing  pain to see this team also.
This was my second appointment. I had already privately had confirmed through MRI osteoarthritis of my lower spine and also degenerative discs. I also have a subcondrial Bone cyst (that is likely causing impingement ). 
The bone cyst is normally a sign of osteoarthritis in the hip also starting to develop. I have visibly constant swollen knees despite two diff anti-inflammatory.  
Those are undeniable.
I have much other issues with pain and muscle weakness and lactic acid burn, muscle spasms, restless leg etc etc but the above is indisputable. 

Yesterday I had a qualified doctor on the rheumatology team tell me my PAIN IS IN MY SOUL. 

That I'm probably too nice for the world and take all this stuff from out there and take it in on myself...
So basically my pain is psychological!!!!!! 
This is the absolute BS myself and many other ME patients have to put up with constantly when trying to access medical care being extremely ill and suffering . We have nowhere to go. And this is the shit we are dealt with when we do !! 

This consultant is contravening Irish  agreements to abide by WHO in stating she does not believe in ME will not treat those patients... and her fibro patients she sees short term and she basically told me she sends them on workshops which is mainly for the psychological management of issues and finishes up with them as quickly as possible.

Simon Harris minister for health this year repeatedly states all the consultants all the support services like neurology and rheumatology are there doing a brilliant job serving the the ME patients.
It's all great and nothing needs to be done, pathways to care are established!! 

The reason we are out protesting at Dáil Éireann next week is to get Myalgic Encephalomyelitis on the curriculum for medical students, to have these ignorant medics brought up to date on ME so that we can now access care with these consultants and not be met with derision and TO have a proper diagnostic criteria enforced for  accurate diagnosis of ME, helpful to doctors and patients alike.
We need  a specialist consultant of our own, educated to the complex nature of ME and it's multi-systemic issues and co-morbidity.

Last month the HSE mailed the ICC diagnostic criteria of ME to every neurologist in the country. This is a  good start. But we have such a long way to go.

( When I stated this little fact to my non believing rheumatologist, she said that had nothing to do with her and I wasn't going to re-educate her ... IN fact it does have to do with her. ME is inflammation of the brain and spinal chord which of course will have rheumatology knock on effects in some patients. 

We need them to know what they are at.  All doctors and especially a consultants job is to keep up with progress on disease and treatments etc and her refusal to do so is neglect and failure to do her job ), it's not my job to re-educate her that is correct its the HSE, its someone else in continual  education of medics AND its her own responsibility to keep up in whats affecting her own speciality.  
Why are very sick ME  patients continually having to deal with this  absolute BS*. 

I am so enraged after yesterday's appointment.  

Despite all my undeniable physical painful conditions that an appointment would take such a ridiculous turn and that I have yet again to fight tooth and nail for some basic health care in this country. 

Labelled with a condition of ME/CFS or fibro and you fall between the cracks of Health care ... or should I say are pushed down between them because they do not want to know and do not want to try figure out how to help you. Go home and rot. 

This is why MEAI will be at the Dail May 10th demanding change for  #Myalgicencephalomyelitis patients.


Myalgic Encephalomyelitis (ME) Visibility Protest Organised from Campaigner's Sickbeds May 2018

That was the brilliant headline given by Emily Aherne of the Avondhu Newspaper (3-5-18) about the upcoming MillionsMissing in Dublin Thursday 10th May. 

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.  

Corina was also interviewed about her life with M.E. and talked at length about the lack of care, treatment, understanding and support by the Irish government and the HSE. And how the HSE fails to 'join the dots'.
Thank you Bernadette and Stan of 'The World in View' for such clear understanding and willingness to listen and learn.

Avondhu 3-5-18
Avondhu 3-5-18

Avondhu 3-5-18
Avondhu 3-5-18

Article in Evening Echo 8-May-2018 HERE