Call for Change ME Awareness Event AV Room Leinster House

Part of the 'Call For Change' Presentation given during the ME Awareness and Educational event in the AV Room at Leinster House, Dublin on the 24th January 2018.

Noreen Murphy who has severe Myalgic Encephalomyelitis (ME) was too unwell with her symptoms to travel to Dublin and deliver her own speech as part of the 'Call For Change' presentation given in the AV Room in front of government representatives. Noreen's presentation was read by Moira Dillon of ME Advocates Ireland (MEAI). To listen to Moira reading Noreen's presentation, go to 19.30 minutes into the video recording (7 minutes)

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Here is a transcript of Noreen's piece:

'My name is Noreen Murphy, from Mullingar.

In 1986, I was 27 years old, happily married to my childhood sweetheart, Anthony.  We had 2 sons, aged 6 & 4.  We both worked full-time.  We had family & friends whose company we enjoyed. Life was good.

In 1986, I contracted a virus.  After 3 months of antibiotics I didn’t get better.

In 1987, I collapsed.  My body stopped working.  Unbelievable weakness. I had horrific pain up my back into my skull, with stiff neck - plus pain everywhere I had muscle, joint and bone, and severe headaches.

After 2 days in hospital, the doctor told Anthony that he could bring me home even-though  I couldn’t walk or feed myself, or move.’  The Doc said I’d be okay in a few days.

Anthony lifted me out of the hospital bed to the car and home where he put me in bed and where I stayed!  Little did I know it was the start of over 31 years of M.E., of neglect, of listening to derogatory words from PAID doctors and consultants, of their ignorance and lack of wanting to learn about M.E., of our government’s total neglect towards us patients.

Anthony would feed me some breakfast before he left for work around 7:30 each morning and I had to spend my day lying prone, unable to move, unable to go to the bathroom, unable to even get a drink of water - until Anthony returned that evening, carried me to the bathroom, gave me something to drink and fed me.

We spent thousands of pounds in those first 2 years trying to find out what was wrong with me. Dr. Hillary Webb, a Dublin consultant, diagnosed me with M.E. in 1988.  I thought a diagnosis would be great - and it was - except there was no treatment.

As Woody Allen said: “There are worse things in life than death”.  That definitely applies to M.E.

In the first few years, I thought about ending my life. I just couldn’t live like that -a vegetable, in horrific pain and a burden.  It was extremely unfair to Anthony and the boys.  I thought that if I did end my life, my husband would eventually find someone else, someone healthy, and our sons would have gotten over it in time. 

Instead, I’m still living in an ‘open coffin’- our bed and they all still see me so ill - as do our beautiful grandchildren now. Another generation seeing this. It’s just heart-breaking.

Had I known what was ahead of me, I think I would have, and probably should have, ended it all.  It would have put us all out of our misery!

Life continued until I got to a stage where I could move a bit and feed myself and years later I went from Severe M.E. to moderate, which made a great difference - not that I was well - but I was a hell of a lot better than I had been. I started painting, which I enjoyed.  Plus, we managed to go on a holiday.

Unfortunately, I contracted Lyme Disease from a bite I got on holiday in 2006.  My GP said I got Lyme so badly because of M.E. causing my immune system to be very compromised.  In 2011 Prof. Austin Darragh did my Natural Killer cells test and it was at the lowest.  Our immune systems are so compromised, I pick up every bug that’s going.

I have Severe M.E. again, for quite many years now. My life is spent in bed, in a darkened room with a noise-cancelling headset, as I cannot tolerate light and sound.  When I get worse, I cannot tolerate smell or any movement at all, so I must be left there alone. Some days I live either on 4 slices of toast or nothing at all because the nausea is so severe.

- Our Autonomic Nervous System controls the automatic function of our bodies such as Heart Rate, Blood Pressure, Temperature, etc.  Severe M.E. patients have a dysfunction of the ANS.

- I have no temperature control.

- My Heart Rate can go from 80 to 130 just by walking from the bedroom to the bathroom.

- I have Orthostatic Intolerance, which means my Blood Pressure drops when I go from lying to sitting or sitting to standing.  That causes dizziness, fainting and falls.

There are times when my GP has asked me to go the A&E.  I don’t, anymore. How could I tolerate the level of noise, light, movement, etc.  It’s like somebody tore my nerve endings!  Also, the numerous questions asked by staff.  Flinging questions at M.E. patients is like asking 6-year olds to do Calculus. 

I should add here that no hospital doctor I’ve ever seen has heard of M.E. or knows anything about it!  One doctor in the Medical Assessment Unit told me he never heard of it and would google it!

- We have low Blood Volume, so we do not have enough blood circulating around our brain and heart, which leads to cognitive problems and low cardiac output. I get a lot of severe chest pain - I’m often lying in bed with severe chest pain and wondering if it IS a heart attack this time.  I have to just say to myself “well, I’ll either wake up in the morning or I won’t”. 

- I have episodes of paralysis which are very frightening.  Sometimes it’s just both legs, other times it’s my arms and legs.  But, on occasion, it has been full-body paralysis.  I cannot tell you how afraid I am.  I never know how long the paralysis will last. 

- I get severe spasms in my muscles, some have lasted weeks.  On one occasion, the muscles in my thigh spasmed and strangulated the sciatic nerve.  Absolutely unbearable pain, that lasted 3 weeks, even with injections and even with muscle relaxants. The spasms can affect the throat muscles, which cause choking. Spasms also affect our internal organs, our stomach, and bowels.  I’m on daily meds for those as well.

- The tremors and seizures are also shocking.

-I have Dystonia which is where my muscles involuntarily contract in an abnormal way.  Sometimes my hands turn inwards completely, until they are touching my inner arm.  The pain is outrageous.

- Vision problems include blurred vision, double vision, etc.

And in the 31 years, I have never had a day where I didn’t have pain.  Pain in muscles, joints, bones, nerves, and severe headaches.

The list is endless. I have all the above symptoms.  Would you call that living???

How a GP is supposed to help M.E. patients when it is not even taught in our Medical Schools?

To be blunt, we are literally left to rot and die - that is no exaggeration!

It is very difficult on our families to see us, they never know how bad we’ll be from one day to the next - or even from one hour to the next. It’s a terrible existence.

“Of all the forms of inequality - injustice in health care is the most shocking and inhumane.”

~ Martin Luther King Jr