ME Awareness

Why Words Matter


Words can be soothing, powerful and strong. Words can help ease pain and suffering. Words can explain the why’s of the world, ask questions of the world. Words can annoy, words can destroy, but ultimately, words can and do lead to changes within our world.

I began sending words to our department of health in 2015/2016 and when a new minister took over, I passed my mantle on to him as I directed my badgering words at him.

The letters were always the same. When will ME patients in Ireland be treated as they deserve to be treated?

Then, in July of 2018 I learnt about the failed treatment by our HSE of patient Christine Fenton and an investigation report which recommended a working group be set up so as to implement three changes within the HSE:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME.  It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers.  To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs. Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately & adequately assess their needs.  There should be uniformity in the assessment models used in each community health area. 

And so my question changed. I began asking bluntly, sometimes daily, when the recommended working group would be set up.

In April of this year, the minister for health sent me forward to the HSE where my question was finally answered.

I can’t share the workings of the group as they are confidential but thanks to Christine, some information relating to the working group has been made public and can be viewed here.

As I said, words can and do lead to change. Thanks to Christine Fenton and her perseverance there is hope change is set to occur within our health system.

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Living with ME · ME Awareness

The Marvels of May


Two houses are under construction. The builders astuteness and attention to detail better than any other builder I’ve ever seen.

All day damp mud is drawn from the nearby river as the symbiotic rhythmic sound of their chatter echos about me.

There are no jack hammers or concrete lorries. Just simple mud to call a home. Soon there will be chicks and then later in the summer, the take off flights will begin. But for now, I marvel at the talents of the house martin.

While nest building is in full swing and the cuckoos call is added to mix of chatter, things too are changing in my world. Or I should say our world.

You see for years patients with ME have had to endure scoffs from medics, from friends, from families. Even from researchers.

By the time the house martin chicks have fledged and moved onward to their wintering ground in Africa, I hope the changes within our world will continue to build.

Days ago, Dr Davis and his team announced they’re a step closer to devising a blood test for us. Imagine that. Going to the doctor and having one blood test done? How many ME patients waited months or years for their diagnosis? How many tried to talk over doctors as they said “It’s all in your head…” “ME doesn’t exist…”

Our day of house building has begun. For more information see this link

Published Pieces

Voice of Eve


 

Living mainly adrift from the world enables me to see through the lens of life, from afar.

It’s through this pair of binoculars my poems are often crafted and two of my creations were recently published in the magazine The Voice of Eve.

The first, We laugh so Hard speaks about the too many people within our communities struggling to keep afloat and the second Keystrokes and Brown Doors looks at communities again, only this time the concept of being part of something and yet, isolated.

Both poems can be read in the current issue on page 100.

Window Watching

Never in Haste


It’s said we should never make decisions in haste and so I’m taking time to mull over my participation on this internet of things.

Years ago I dumped social media. As I said to Facebook when asked why I was leaving, “I no longer wanted to take part in their social experiment.” A sick experiment which has devastated lives and enabled and emboldened the negatives of the human psyche (something which also applies to Instagram and Twitter).

Since leaving that world, I’ve found a happy space. That balanced space where I have the time to give to friends and the time to give to family. My phone – a phone without internet access – is rarely near me and it has a thing called voicemail, so if anyone does need to contact me, they can.

It’s refreshing not to know every tiny insignificant detail of someone else’s life and equally refreshing to not care about such silliness. As for my linkage with world news… I use the TV and the internet via my PC to check in on world news and do so knowing I’m reading what I want to read, not something somebody else thinks I should read.

Yesterday, I chose not to find out the name of a certain person and I too chose not to delve into his details, instead I focused on the lives lost in New Zealand. Today I think of their families and the funerals they are planning, as I ask myself if the time has come to cut ties with this web? After all, why should my data be saved alongside someone whose views I reject?

If I entered into a room of hatred and spite I’d quickly leave. The internet affords me no such move. I’m sharing the same data centres and space as those whom I wish to dismiss. Whether I want to or not.

*A version of this blog was printed in the Irish Independent Letters to the Editor, March 18th 2019.

Living with ME

Breaking Balance


“La la la la la la la la la… la la la la la la la la la…”

“I love my body, I love my body…”

Had any one of you placed a listening device within my home last Saturday evening, these are the mantas you would have heard emanating from the walls, as I lay in bed suffering from what for me was a busy Saturday.

That morning I woke and did very little. The kitchen table had been set the night before so all I had to do was dress and put bread and milk and butter out. Then I sat and rested until three good friends arrived for their prearranged visit shortly before noon.

They all brought additional food with them and all made trips to the kettle for themselves, meaning I was the spoilt one, the one sitting doing nothing as they milled around my kitchen – something they’re well used to doing by now -.

I truly do have the best friends in the world and love having them visit as they share their thrills and spills with me. One of the trio in particular is hilarious as she keeps an eye on her watch and when the hand strikes one hour, she’s up off the table like a hospital matron or prison warden. Cleaning the things away and washing dishes before wiping down the counter top and herding everyone out of my home!

About two hours after their visit my body began showing all the usual signs of post exertional malaise. There was the increased fatigue, the sore legs, the sore head and the angry digestive system – I’ll let you assume the details here – and so for the remainder of the day I rested and rested before eventually toddling off to bed where my body decided “Sleep, who needs sleep? Especially when you’re exhausted?”

Thankfully I did pass out here and there.

Yesterday was then spent trying to get my body back into my zone as I call it, so I sat on my ass for the day and snoozed on and off before tackling sleep again last night. Thankfully I woke today almost back to where I need to be. Another day’s rest and I should be there.

This is not the end of the story however, this story has a second side….

On Saturday, after a shower, ironing his clothes and making breakfast, my husband left our home at noon to attend a family gathering and didn’t return to our home until close to or after midnight.

His outing entailed 16 kids and counting, double that or more in adults. Noise, noise, noise… and after all this, he fell into bed and slept. I won’t begin to tell you just how jealous I was at 3am.

To turn me into an entire green monster, he woke yesterday and was tired but nowhere near as tired as me. He even managed to leave our home to run an errand in the afternoon. It was as if his body was saying na-na na-na-na to my poor broken one.

So I ask you this puzzling question… When did the see-saw of balance break?!

Living with ME

Being, Included


Living in a body unable to travel far means I no longer wander into the adventures of the outer world.

Now don’t get me wrong, I still have adventures but they’re different. They involve burnt red coloured foxes and large grey winged herons, staccato screeches of pheasants and the copycat imitations of starlings.

My adventures also include short snapshots of the world. A short visit or a short visitor. A pop by of a neighbour or a passing friend but for the most part, I live away from the workings of the outer skins of the world. I just am.

It’s nice though not to be forgotten by that world and yesterday that world reached out to me, inviting me to a wedding, the requester aware I would not make it but nonetheless wanted to include me. As was said, I’m a friend.

Inclusion is a must in our globular world, a needed reference point upon our ever moving stage, as needed as our North and our South. Each of us dots among a giant compass of a world, dots joining one another together. Some lines apparent, others more blurred.

I sit within my blurred line today, thankful to be able to just be. Included.

Living with ME · Window Watching

What happened to the Brown Paper Package?


Brown paper packages tied up with strings…. these are a few of my favourite things…

My favourite things lost a listing yesterday when having opened a gifted box of chocolate celebrations, I was shocked to find the sweets are still being wrapped individually in coloured plastic – worse still, plastic that can not be recycled – .

Then this morning to add to my woes, I learnt the Pacific Plastic Clean Up device deployed between Hawaii and California, is failing in its efforts to tackle the large garbage pile in Pacific Ocean.

Now anyone who has read my column in the magazine Athenry News and Views will know I’m passionate about our climate and despise plastic packaging, so it will come as no surprise to learn that I attempted sending Mars Inc. an e-mail via their contact form – a form which refused to allow me hit send – and so ringing them, I inquired as to why their sweets are still being wrapped in plastic and why too could they not be wrapped in paper instead.

A polite customer service agent stated Mars intends to use fully recyclable material across all its products by 2025, however, there was no clarification given that the packaging would in fact be moving away from plastics, I was merely advised all packaging would be fully recyclable by that time. Then, when I asked why this target was so far out, the agent repeated her statement and assured me there were employees working on the issue.

I then asked if I will have to wait until 2025 before purchasing a box of celebrations and I was politely told she could not make such a decision for me. And so I poignantly stated I would simply have to settle for fruit until Mars amended its packaging and I waited until 2025 before purchasing another of their products.

That statement was met with with silence.

Living with ME

That kind of Weather


It’s that kind of weather.

The sort that’s mild and damp and rainy and windy, the sort that pushes people indoors and on top of one another and the sort that provides a petri dish for gallant bugs.

There was a time when sick people went to convalescent homes or simply stayed at home, now it seems, people stick a tablet in their mouth and “push on.”

I’m against these pushers on and am all for pulling back. I guess my reasoning is simple. I’m sick,

A cough or cold for me = a flu

A flu for me = the possibility of pneumonia

and so I have one rule within my home. You do not visit with a cough or sneeze or bug of any sort, you keep such bugs to yourself and postpone your visit to a time when you are well.

This logic however seems to be lost among a cohort of society who wish to share their germs and infections with the rest of society and so today, to all of them, I say. Stay put.

Stay at home.

Living with ME · ME Awareness

Shepherds & Warnings


Wednesday and a red sky sounded out the morning. By mid afternoon a stranger sat at my kitchen table sounding out my husband and me.

This stranger wasn’t Santa Claus on an early expedition. She was a local welfare officer and so like a previous meeting with such an officer, I scrambled to think of my many symptoms on the hop as I explained the only change to my condition was the fact I’d been pulled off GET (Graded Exercise Therapy) as it had made me worse.

I’m used to the microscope by now and only recently found myself explaining yet again to a family member the concept of good days and bad days and how my symptoms continually fluctuate. Then there was my explanation as to how easy it is to ditch the OCD tendencies I once displayed, detailing when you’re at the kitchen sink and there are ten dishes to wash and you’re struggling to wash seven of them it’s very easy to walk away from the remaining three.

Such conversations are frequent occurrences in my life, as are the microscopes and the judgments and the querying glances.

Now I know I could walk away from them, ignore them and pass no heed as to their tone and voice but I refuse to do so without utilising my voice. And so each time I’m met with a comment or stare, I fight. Providing examples as to what it’s like living in this body and what life altering changes ME has brought to me and to my husband.

It’s sad I have to vindicate myself and my illness so frequently and sad the knowledge and understanding towards ME – a chronic illness  which has been around for decades  – is still not present in today’s society.  When was the last time a cancer patient or an MS or Parkinson’s patient had to justify themselves to the world?

I believe the only way understanding and recognition of ME will ever break through this barrier of ignorance is by using my voice and so I will continue to answer the questions and continue to explain what ME does within a home.

I owe such a fight to the severe ME patients bereft of their voice.

ME Awareness

Latest Letter Writing


Having ME/CFS means I live within the constant bounds of a restricted battery.

Life for me is not as it used to be but I’ve learnt to adapt and survive. Not all ME patients are as lucky as me though. Some patients are profoundly affected, meaning surviving is lying in the same bed day in, day out, for years on end. Others meet doctors who tell them ME/CFS simply doesn’t exist and with a good shake, or change in attitude, they’ll get better. If only such nonsense were true.

Unfortunately this nonsense is scattered among the medics in our society and coupled with scant research – which thankfully is on the increase in latter years – ignorance prevails.

Where ignorance prevails, the chance for change diminishes.

Here in Ireland I continue to hope for change and as such, continue to write to our minister for health pointing out the knowledge and information available to him and all medics as I continue to ask one simple question.

When will patients in Ireland receive a prompt diagnosis and the correct support they deserve?

My latest letters are as follows:

From: Marie H Curran
Sent: Tuesday 06 November 2018
To: Minister’s Office
Subject: Myalgic Encpehalomyelitis – Your letter dated August 1st 2018

Dear Minister:

I wish to draw your attention to the revised information re ME/CFS on the CDC website,

The snapshots are as follows:

1) ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems.

2) Any activity or exercise plan for people with ME/CFS needs to be carefully designed based on individual presentation with input from each patient. If possible, evaluation by a rehabilitation specialist may be beneficial. For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.

3) ME/CFS affects patients in different ways, and treatment plans should be tailored to address symptoms that are most disruptive or disabling for each patient. It is best to proceed slowly. Expecting patients to return to usual activities should not be the initial management goal because the physical and mental exertion can aggravate symptoms and debilitate patients. An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing), and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”

4) The severity and frequency of the symptoms can vary among patients and can vary for an individual patient.Symptoms can fluctuate during the day, from day to day, and throughout the illness. Some patients may not be obviously ill-appearing during clinical evaluations. However, if patients are severely affected or are having an exacerbation of their symptoms, even visiting a clinic for care might not be feasible at times. Thus, healthcare providers may not see patients when their symptoms are most severe.

5) The spectrum of ME/CFS can range from mild to severe. For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life. Those patients who are moderately impaired might, for example, have trouble maintaining a regular work schedule or standing and sitting for prolonged periods. Patients who are severely or very severely affected by ME/CFS include those who are completely wheelchair-dependent and house- or bed-bound for months or even years. Some primarily house-bound patients have increased symptoms after trips for healthcare or after performing daily tasks that healthy people take for granted, such as bathing, showering, and cooking meals. Those who are bed-bound might need assistance performing even these basic tasks

6) Some of the reasons that people with ME/CFS have not been diagnosed include limited access to healthcare and a lack of education about ME/CFS among healthcare providers.
Most medical schools in the United States do not have ME/CFS as part of their physician training. The illness is often misunderstood and might not be taken seriously by some healthcare providers. More education for doctors and nurses is urgently needed so they are prepared to provide timely diagnosis and appropriate care for patients.

When will Ireland’s healthcare system take such information into account and when will medics become equipped with this basic knowledge so as to begin to offer patients a timely diagnosis and support plan?

As always, thank you for your time,

Kind regards
Marie Hanna Curran

From: Marie H Curran
Sent: Tuesday 18 September 2018
To: Minister’s Office
Subject: Myalgic Encpehalomyelitis – Your letter dated August 1st 2018

Dear Minister Harris,

Many thanks for your latest letter dated August 1st 2018 and while I understand the international guidelines regarding the treatment of ME are undergoing review, I too am aware of an independent report published recently.

The investigation report dated July 2018, gives thirty-three report recommendations, the three most relevant to the ME Community are:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME. It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers. To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs. Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately & adequately assess their needs. There should be uniformity in the assessment models used in each community health area.

What does the HSE intend to do in light of these recommendations Minister?

As always, I wish to remind you of the patients in this country let down by the current health system and ask when can you assure me all GP’s and medics will know what ME is, how to diagnose it and how to support patients on their path as they adjust to living with ME?

My query is a basic fundamental question, a question I will continue to ask until all ME patients in this country receive the care they deserve.

Many thanks as always for your time,

Kind regards
Marie Hanna Curran

From: Marie H Curran
Sent: Thursday 15 March 2018
To: Minister’s Office
Subject: RE: Myalgic Encpehalomyelitis – Your letter dated March 13th 2018

Dear Minister Harris,

Many thanks for your letter dated March 13th 2018.

While the letter is by far the most notable correspondence I’ve received from your department to date (even if it regurgitates most of my own words previously sent to you), it still doesn’t answer my underlying question: When Minister will ME patients be able to walk into any GP surgery and receive the adequate care they deserve?

In 2018, it still depends upon luck as to the care an ME patient receives. It depends upon luck as to which GP knows about ME, and luck as to how that GP will approach ME. This is simply unacceptable.

There should by now be a set of guidelines available to all GP’s and medics across the HSE equipping them with the know how to diagnose and support ME patients.

Minister, when can you assure me all GP’s and medics will know what ME is, how to diagnose it and how to support patients on their path as they adjust to living with ME?

I know there is no known cure and I equally know there’s no diagnostic test as of yet but there are steps a GP can take to diagnosing ME, such as following the guidelines set out by the UK ME Association (http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/)

These steps include ruling out all other illnesses and being able to recognise the main symptoms of ME such as: Post Exertional Malaise, cognitive difficulties, sleep disturbance, pain and autonomic symptoms.

The knowledge is there Minister but it somehow isn’t filtering through to the medics in this country and as I say, no ME should be dependent upon luck as to meeting a doctor who knows what ME is.

Every medic in this country should know ME is a neurological condition and I again point you to the UK ME Association and the Irish ME Trust and Irish ME/CFS Assoc all of whom have wonderful knowledge on this illness, knowledge available to GP’s and all medics alike.

When minister will this knowledge be in the hands of all medics and when will it no longer depend upon luck as to receiving the appropriate care any ME patient requires in Ireland?

Many thanks for your time

Kind regards,
Marie Hanna Curran