Posted in Explaining ME

May and ME Awareness


ME Dail May 11th 2017On May 11th a wonderful group of Irish patients, their family and friends took to Dáil Éireann for a four hour protest highlighting the lack of services and understanding in today’s Ireland for ME patients.

The protest was run in conjunction with the international protest “Missing Millions” and those of us unable to attend were represented by pairs of our shoes (Mine were pink runners with my toe tag saying “missing from Athenry AC – my local running club”).

Thankfully some TD’s gave up their time to listen and TV3 News broadcast a segment on their evening bulletin and the Irish Examiner also published an article.

Every time I think we’re facing a brick wall, one piece gives way and reignites the ember of hope. Thankfully that ember continues this May.

In addition to the above, two wonderful pieces relating to life with ME appeared in the Irish Times and Irish Independent. Also, regional newspaper the Connacht Tribune gave up its print to interview me and on Galwy Bay FM, a patient was too interviewed.

Finally,  The Irish ME/CFS Association has arranged for Dr Ros Vallings, an ME expert from New Zealand, to give 3 Irish ME/Chronic Fatigue Syndrome talks this May. 

Dr Ros Vallings has written 3 books on the subject in recent years: (i) Chronic Fatigue Syndrome M.E. Symptoms, Diagnosis, Management (352 pages), (ii) Managing ME/CFS A Guide for Young People (144 pages) and (iii) The Essential Guide to CFS/ME which is being released this year. And brings a wealth of clinical experience from 50 years dealing with ME patients.

Admission is €5, on the door:

Wednesday May 24: 7:30 PM  – Maldron Hotel,  Sandy Road, ( off Kirwan Roundabout on Headford Road), Galway City.  

Friday, May 26: 11:30 AM – South Court Hotel, Raheen,  Limerick

Sunday, May 28: 2:30 PM – The Maldron Hotel Dublin Airport

 

Posted in Explaining ME

Are you not just Tired?


Ask any patient what ME is and you’ll find you’ve opened a can of words.

You see, ME is a life altering illness and so you’ll be told about a past life and a present one, the present one filled with limitations and regimented regimes. The past one forgotten.

Then there will be references to crashes and the ill effects of stepping beyond a body’s capabilities. As for the daily symptoms, there are a lot of those: headaches, nausea, the low tolerance to noise, the heightened senses, the sore muscles, bone pain, severe fatigue, electric-shock-like-pains, digestive disturbances, cognitive difficulties. The list is a long one. You see, ME patients aren’t just tired, or a little bit tired, we’re what I call absolutely whacked.

Now comes the puddle of horse poo. You see, like that of a piano keyboard, my ME symptoms differ everyday. There are days when my body’s dynamics are that of p for piano, the symptoms present but lessened and then there are the forte days, when everything is ramped up.

On the lessor days I can manage to do a few small tasks, be it writing for a short period of time, going food shopping with my husband, having a visitor for an hour or gentle weeding or light work in the garden. These tasks are done in spite of having ME, not because ME has toddled off and of course my symptoms will be exacerbated as a result of these tasks. Then there are tasks I simply can no longer do, like attending social events such as weddings or standing for long periods of time, or walking distances.

So you see, ME is a constant, an ever present. A debilitating illness patients have to learn to live with, to adapt to. ME is not just being a little bit tired or a little bit off, ME is living constantly within a limitation.

For more wonderful facts, jump to the category section or delve into posts such as this one: the-invisibility-clause

Posted in Explaining ME

The Golden Key


As most of you know I’m an obstinate being, which when dealing with ME, is a handy tool but as some of you may not know, this stubbornness isn’t always needed when dealing with the symptoms of ME, it’s actually often needed when reacting to people’s perceptions and comments.

Stop any randomised sample of people the next time you’re out in the street or at your local supermarket. Ask them “What is ME?”

Now imagine having ME and having to explain to people what it is you suffer from… believe me the lectures start to shrivel year by year, and as has happened to me in year five of my new life, they start to become incredibly thread bare, to the point where I’ve begun thinking F*** It!

Unfortunately, ME Awareness relies on patients and as much as I want to say F*** It, I can’t. I have to keep doing what it is I do, writing to our health minister, explaining to people what this illness is and what it does to people’s lives, pointing them toward relevant information and telling them about research. Knowledge is key.

On May 12th, International ME Awareness Day, I wrote to the health minister, Mr Simon Harris inviting him to attend a screening of the documentary “Forgotten Plague“. He responded saying he was unavailable. I also wrote to a newspaper, inviting journalists to attend. That invite was met with silence.

Simon Bourke, of the UL School of Journalism contacted me recently while writing an article about the ignorance surrounding ME, namely that of our government, thankfully, his words weren’t met with silence and his piece was recently published in TheLiberal.ie and can be read here.

Awareness is the golden key.

http://www.mariehcurran.com

Posted in Explaining ME

Simon & ME


The Irish ME/CFS Association are hosting screenings of the ME documentary “Forgotten Plague” in varying venues throughout Ireland for the month of May. And when writing my first letter to the newly appointed health minister Mr. Simon Harris, asking the same question I asked his predecessor“When will ME patients in Ireland receive the care they deserve from the medical profession?” I included an invitation to attend the Blachardstown screening.

Today on International ME Awareness Day, I received the following response:

“I wish to acknowledge receipt of your recent letter requesting the Minister to attend free screenings of the ME documentary, “Forgotten Plague” being held by the Irish ME/CFS Association on Sunday May 29th at 3pm in Crowne Plaza, Blanchardstown . Your letter will be brought to the attention of the Minister at the earliest opportunity.”

Being an eternal optimist, I’ve every hope a man elected into government by the people of this country will turn up to the viewing on May 29th…

http://www.mariehcurran.com

Posted in Explaining ME

Liar, Liar, Brain on Fire


My brain’s switched itself off, I scramble for words.

All the while, he and his wife stare back at me, eagerly awaiting a reply.

“Oil” I gush, proud to have thought of something, still knowing a better, more correct response hangs between the strands of my puzzled mind but it would be hours before the words “coal” and “timber” write themselves in. My neighbour and his wife long since returned to their home, believing my parents heat their home entirely on oil.

Brain mush I call it. It happens when I’m bad, when every cell is busy pumping oxygen around my rusted body, keeping it alive the way a crocodile ensures he lives throughout periods of intense heat.

Thinking shuts down, simple questions become mountains to crawl on one knee, words run astray and I’m left with just me.

On days such as these, I stay away from my garden bench, hiding out in my back yard but once in a while I’m caught out, tripped up by a passing neighbour and my need to amble between the plants on my front lawn.

On days such as these, I stand and nod at flowing sentences, smiling my replies and then BAM I’m asked something that requires thinking, requires constructing a coherent answer and few words, if any, will enter my head. My distracted mind focused instead on the persons good sense of style or by the way in which they wear a hat or how they comb their hair.

Returning to the unanswered question, I fumble and fall over words, saying something, anything, even if it ends up a blatant lie.

The official term is Brain Fog, one of the many annoying and inconsiderate symptoms my friend, Myalgic Encephalomyelits likes to throw at me, especially in public. A symptom that turns friendly conversations into laborious grammar lessons, a symptom which leaves baffled neighbours wondering what exactly this Myalgic Encephalomyelits is.

http://www.mariehcurran.com

 

Posted in Explaining ME

Letters, why attach the words?


Almost a year ago my letters to Mr. Leo Varadkar, Minister for Health, began. Letters filled with words, words filled with one main question, “When will ME patients in Ireland receive the care they deserve from the medical profession?”

A question to which the following response was continually issued to me “Thank you for your letter, it’s receiving attention.”

And so began my unrequited letter writing, hoping one day, one would eventually receive a response longer than a mere scattering of words.

This week, one did…. there were lots of letters, lots of words… but my question still went unanswered:

“Dear Ms Curran,

The Minister for Health, Leo Varadkar, has asked me to thank you for your letter concerning Myalgic Encephalomyelitis.

Let me write firstly that many of the challenges facing people with Myalgic Encephalomyelitis appear to be based on the symptomatic approach taken in terms of management. The implications for same are that patients are treated by many different specialities including rheumatology, immunology, neurology, pain specialists, etc. An integrated holistic approach provides the basis for care of individuals with Myalgic Encephalomyelitis.

Some priority developments for our health services include:
–        Development of Integrated care programmes
–        Implementation of Individual Health Identifiers & eHealth
–        Establishment of Hospital Groups
–        Enhancement of the Departments information and research capabilities.
All of these priorities are advancing and when achieved should have a role to play in supporting patient centered integration of our health services to the benefit of all service users including those with Myalgic Encephalomyelitis.

The HSE’s promotion of patient centred integrated care has seen the establishment of Integrated Care Programmes for, among others, the prevention and management of chronic disease.  Integrated Care aims to ‘join up’ health and social care and put good patient outcomes at the centre of care delivery. This work involves:
–        New and improved structures for integrated care
–        Resources in the right location at the right time
–        Re-structuring of roles to allow for community outreach
–        Focus on and prioritisation of patients with chronic disease
–        Encourage partnership environment between patient and doctor/GP
–        Centralised repository access for self-care information.

Ultimately, the Integrated Care Programme for Chronic Disease aims to provide a framework for:
–        Supported self-management
–        Patient managed at the most appropriate level of complexity
–        Reduced hospital admissions
–        Reduced emergency department attendances
–        Reduced length of inpatient stay
–        Increase in early discharge
–        Reduced GP out of hours attendance.
All of these initiatives will benefit patients with Myalgic Encephalomyelitis around the country.

Care pathways specifically for patients with chronic disease will be incorporated in the model of care for chronic disease. These are likely to be more generic pathways outlining best practice to better support patient management.

The eHealth strategy also applies to chronic conditions such as Myalgic Encephalomyelitis. It will effectively marry specification of patient data with technology as an enabler to offer a wider solution to support models of integrated care. The individual health identifier and electronic patient summary record will support the management of patients across different sites and specialities such as is the case with patients with Myalgic Encephalomyelitis. It would mean that all those working to support the patients will have ready access to the most up to date information on the patient’s status leading to a more joined up approach and avoiding treatment occurring in silos.

Other relevant health strategies such as Healthy Ireland, have key goals with respect to reducing health inequalities and implementing principles of equity and fairness. The overall vision is a system in which everyone can enjoy physical and mental health and wellbeing to their full potential, where wellbeing is valued and supported at every level of society and is everyone’s responsibility. The strategy, reflecting the corporate plan, places a significant emphasis on quality and patient safety seeking to ensure that people’s experience is not only safe and of high quality, but that it is also caring and compassionate. This should be applicable to all patients.

The information currently available on the HSE website will be reviewed as it is acknowledged that information needs to be current and reflective of best practice in the area of treatment and management of all conditions. Information on the webpage is currently based on the UK NICE guidelines published in 2007. While there may have been recent developments in terms of management of Myalgic Encephalomyelitis, a revised NICE guideline has not as yet been developed/published.

I hope that this helps to explain the current position with Myalgic Encephalomyelitis.

Yours sincerely”

 

I’m stubborn by nature and so decided to send one last letter before the General Election takes place in three weeks time:

“Many thanks for taking the time to send me your detailed e-mail, especially now, as it’s so close to the General Election.

While your e-mail is indeed detailed, I can’t help but wonder if the words Myalgic Encephalomyelitis were stitched in between varying sentences of an e-mail prepared earlier for a different query.

Also, the information provided lacks one concise answer to my question… when will an ME patient be able to walk into a doctors surgery and a) receive early diagnosis (this shouldn’t be difficult as there is list of tools for diagnosis available from many sources including a detailed report for the IOM in the US) and b) be supported by a doctor throughout the illness?

As I’ve stated from my first e-mail almost a year ago, I’m not expecting a cure, I’m not expecting an ME specific clinic to be set up.

I’m simply asking that the citizens of this country who happen to become ill with ME (approximately 12,000 of whom are diagnosed at present) be treated in a caring and understanding manner and receive the support they require from a primary care setting.

What I mean by support is that a doctor can explain what ME is to a patient upon diagnosis, and then point them toward sources such as the Irish ME Trust and the Irish ME/CFS Association, assuring the patient that they are not alone, assuring them information is indeed available to them and access to other patients is available also. This would be beneficial to both the patient and the patients family and help ease the stress of diagnosis and the uncertainty of the illness.

Receiving a timely diagnosis and the basic care from a GP would be hugely beneficial to patients and this simple, economically friendly step would be the first milestone set by any Government in this country. It’s just a pity 12,000 people are still waiting for this step to be taken.

Go n-éirí an t-ádh leat leis on olltoghchán.”

 

http://www.mariehcurran.com

Posted in Explaining ME, GET & Exercising

Yesterday’s Threesome


Having read an article yesterday morning suggesting ME can be bettered by both GET and CBT, I was at the ready for the surprise phone call that followed.

One which led me to speak with radio host Matt Cooper live on his show The Last Word broadcast on Today FM and also with Professor Michael Sharpe, co-author of a paper published yesterday from Oxford University.

Additionally, it’s been brought to my attention today, November 3rd, the radio show is inviting people to air their thoughts re GET and the PACE trial, should you wish to do so, please follow this link.

 

Posted in Explaining ME

Empowerment in Realisation


“There’s a sense of empowerment in knowing and realising the depth of inner strength.”

On Friday evening, during my nightly sunset, meditative walk in my garden, I met a set of headlights, headlights bound for my neighbours drive.

Waving, I walked on, continuing toward my set of twenty-four rowan, hawthorn and conifer trees, most of whom are in autumns grip, only the conifers with their spinach like complexions, impervious to the seasons change.

When the car parked, a lady walked to the boundary fence introducing herself. It was our first time to meet officially. I’ve seen her often but never shared her company.

Chatting, she recognised how I used to work with one of her daughters and when I began to explain how I’d given up work over three years ago, she nodded, saying she knew about my illness from another daughter (the one who lives next to me, the one away on holiday).

Asking about the difficulties of my illness, I told her giving up my wage had been most difficult. So much so, I pushed to remain at my desk for five months, before throwing my hands up in defeat.

Telling her, how by then, I’d lost my social life and my hobbies to ME. Losing work was the final label to be stripped from me.

Laughing, I told her how most of my days are now spent sitting at a window, or outside on my garden bench, if the weather allows. She said she didn’t understand how I could laugh.

Shrugging my shoulders, I told her had I been forewarned of my illness, forewarned of my limitations and all I was to endure, four years ago. I’d have cried, curled in a ball and assumed there was no way I was to survive. Yet, here I am, heading toward my four year marker of illness in December, surviving, living.

It was then I turned to her saying, “There’s a sense of empowerment in knowing and realising the depth of inner strength. There’s something powerful about standing in front of a challenge and crawling through it”.

We all crawl at some point in our lives.

http://www.mariehcurran.com

Posted in Explaining ME

Poem: Dear Recruitment Agent


(Note to new readers: Should sarcasm displease- read no further)

Dear recruitment agent who sent me a lovely e-mail this morning asking if I’m interested in an Accounts Assistant job currently vacant.

Unfortunately I’ll have to decline
You see, I haven’t worked outside my home
In over three years
And in my home, I work casually:
Sometimes I clean yesterdays dishes
Sweep dirt under my couch with my four day old sock
Sometimes I pick up a sweeping brush
Proudly make my own meals
Sometimes I chop the tops off my fingernails
Forget that a knife is sharp
Sometimes I burn myself
Forget that a grill pan and toaster are HOT
Sometimes I forget what I’m doing
Find myself searching for clues.

As for outside my home?
I like to take an amble in my garden
Where I often find my legs stuck.
I rarely leave my four walls alone
Don’t drive beyond my local town
Only do so after days of rest
Repeating no sooner than a month later.
A visit to a friend leaves me recovering
The way an ultra-runner recovers
From a blistering race across the Sahara.
Road trips? They’re out too
My body seizes while sitting in the one spot
Nausea swirls easily and the headaches come on
At the slightest sound of noise.
I don’t remember the last time I went clothes shopping
I only go food shopping now, joining my husband
He takes care of the list, I mind the trolley
Holding it with both hands
Carefully pulling my legs.

These legs aren’t made for walking
They saunter, grump up when asked to move
My hips seize, legs weaken
Don’t ask them to take on stairs
Stairs make my legs and heart race,
My arms throw tantrums too
Refuse to raise themselves beyond my shoulder
Burn at my shoulder, wrist and hand.

Oh and the exhaustion, that’s present everyday
I sleep for twelve to fourteen hours
Spend my days amid avid rest
Either on my trusty couch, or outside
On my garden bench.
I can’t follow the plots of TV
Or concentrate on the words of a book
I like to read poetry
(Skipping poems more than a page in length)
I re-read poetry
Forgetting which one I’ve read.

Dear recruitment agent,
Call back again.

http://www.mariehcurran.com

Posted in Explaining ME

Letter Writing (including update)


On March 2nd 2015, I wrote this letter to Mr Varadkar (Health Minister)

“Dear Mr Varadkar and colleagues,

I hope your weekend was kind to you and the coming week equally kind.

My name is Marie Hanna and I’m a patient with ME – Myalgic Encephalomyelitis – also known as CFS – Chronic Fatigue Syndrome – Since falling ill to this disease at the age of 30, on the cusp of my 31st birthday, I’ve had to give up work, my hobbies, my social life.

I’m basically a retired 34 year old, only my life revolves around my home 90% of the time. I’m incapable of travelling or reading a novel or going to the cinema. My husband has become his family’s plus one at family events such as weddings. I made it to my own sisters wedding for a few hours during 2013, however, I ended up in bed for a week after it, the sitting and talking pushing me beyond my capabilities.

My one outing a week is to join my husband on our food shop. He drives and I follow him about while clutching the food trolley. You see, these legs can’t walk very far, or very quickly. As for driving, I don’t have the concentration to drive long distances anymore. I can drive to my local town, twenty minutes away, but only do so on a very good day and never do so for an activity other than visiting a friend for quick cup of tea or attending my GP. (Both allowing me sit and rest before returning to my car).

I’ve learnt to live with my limitations, I’m not cross that there’s no cure for me at present, I don’t dwell on all I can’t do. Living with ME has become my normal. But there are severe patients out there who aren’t as lucky as me. Patients who are bedbound, patients who haven’t seen the upstairs within their own homes in years. Within my own home, my bedroom is downstairs and I only climb the stairs as a must, those 14 steps a running race to this body.

There are children and teenagers missing school and college. I’m lucky, I was in good health for school, I received my degree from UL, I travelled, I worked abroad, I got married abroad, I was a member of my local athletic club, I ran races, I ran a marathon… I’ve lived. So retiring at the age of 34 having lived, makes this early retirement easier to live with. But try telling the parents of children their retirement in their early or late teens is okay?

As per the Irish ME/CFS Association (of which I’m a member), there’s an estimated 10,000 patients suffering from ME in Ireland. 25% of whom are bedridden. Not every GP in this country believes ME is a disease, some say it’s all in our heads. Thankfully, I have a GP who knows how ill I am, who does all she can for me. Not that there is much she can do, but listening and supporting me is the gold dust I require.

I’m writing asking you Mr Varadkar, in your capacity as health minister of this country, to please look into the 235 page report published this week (last Tuesday) by the Institute of Medicine in the US. A report detailing this illness, a report which has re-defined the diagnostic criteria, to better help doctors diagnose this illness and support their patients. A report that has also proposed a new name: SEID, Systemic Exertion Intolerance Disease. You see, the IOM believe the name CFS Is trivialising to patients, something I agree with. They also feel the term ME is lacking and so propose this new name, to encompass what it is we patients suffer from.

I ask that you issue a memo to the medical profession, I’m not asking you cure this, I’m not asking you to open a clinic or provide some magic aid to us. All I am asking is that you, in your capacity, speak with GP’s and consultants, share this report with them and help all within the medical profession understand the severity of this illness, the upheaval patients endure.

Early diagnosis is essential, as with any illness, and the quicker a patient can be diagnosed, the quicker they meet a medical professional who will sit opposite them and agree to share their journey, to help, to support, then the quicker the patient can learn to understand their illness and accept it.

On a second note, the IOM hope that by re-defining the diagnostic criteria, they will entice more medical research. At present the figures for research into ME isn’t overwhelming. Research is the golden key for long term answers for patients. Perhaps you can also look at this? I know our Government are presently working within a deficit, I’m not asking you allocate money. But you could look at what junior doctors are learning in relation to ME? Perhaps encourage more information to filter through to them? Whet the appetites of those considering moving into research? Also, it would be great to see some media coverage about this new name change and re-definition of criteria in Ireland.

All I ask is you consider my request.

I’ve attached two links below synopsising the IOM’s report for your attention.

http://news.sciencemag.org/health/2015/02/goodbye-chronic-fatigue-syndrome-hello-seid

http://www.guardian.co.tt/lifestyle/2015-02-12/finally-chronic-fatigue-syndrome-will-be-taken-seriously

Kind regards,
Marie Hanna Curran”

On March 9th, I received this response from the Ministers secretary “Further to previous correspondence concerning re-defining ME, I wish to let you know that the contents of your email have been brought the attention of the Minister”. And today, I received the same response via e-mail. Not exactly mind blowing!

Responding with a second letter, I’ve asked the following:

“Dear Sir,

Many thanks for your letter and e-mail advising the Minister has been notified of my request.

I saw recently that a motion was put forward at the Labour party conference in late February, calling on the Labour party to actively promote the development of a Consultant post for M.E./C.F.S. sufferers in the country. This motion was passed at the conference.

More details can be viewed here: http://www.labour.ie/conference/motions/detail/1424867360228971/

I’d very much like to know what Fine Gael thinks of this step and if they will more than match it??!

Kind regards”.

Perhaps my next response will be more fruitful!

***Update*** On March 31st, I received the following letter from Mr Varadkar’s secretary “The Minister for Health, Leo Varadkar, T.D. has asked me to thank you for your further letter concerning re-defining ME and to let you know that it is receiving attention.”