Friday 22 May 2020

Sample Personal Care Plan for ME, in particular for those with Severe & Very Severe ME

Severe/Very Severe ME equals severe illness and multi-system dysfunction. 

Taking on board the incredibly debilitating symptoms that people with ME, especially those with Severe/Very Severe ME, suffer from, it is very important that the patient arrives to hospital or other care setting equipped with a Personal Care Plan that will inform medics of the difficulties the person with ME will have with such a visit/admission, and to warn of the other difficulties that might come about if the person with ME is not handled appropriately. 

Receiving care in a hospital setting is not easy, straightforward, nor is it necessarily obvious as to how and when to interact safely and in the best way for the person. 
The Personal Care Plan would outline the difficulties the patient may have being in a new environment where there are many potential ‘dangers’ to their health, and it should warn medics of the other difficulties that might come about if the person with Severe/Very Severe ME is not handled appropriately and according to their Personal Care Plan. 

Personal Care Plans are individual files on each patient put together by the patient and/or carer together with information added from the patient’s primary carer and the specialist consultants the patient attends.

There are strict protocols included in the Personal Care Plan to make arrival, admission, stay, and discharge, as well as medical assessments and procedures as easy on the person with Severe/Very Severe ME as possible, and to prevent major relapse. 

The Personal Care Plan below is a sample only including sample case details re a person with Severe ME, which can be edited to suit your own needs. Each patient’s Personal Care Plan would be different and personal to the individual so changes will need to be made to that sample personal care plan to suit you or the person you are caring for.

Organising a personal care plan takes time and it is important to remember to carry the file for any hospital admission including to ED (A&E)

See Sample Personal Care Plan here and below

Tuesday 12 May 2020

Reflections on ME through Poetry.

As part of this years’s ME Awareness Day, which for obvious reasons can only proceed online,
and not in person as in previous years,
 we asked three Irish writers to reflect on the poetry by Corina Duyn.

Michael Harding, Sr.Stan and Nuala O’Connor reflect on Corina’s writing and reflect on life with M.E., the Covid-19 situation and hoping to ‘not be left behind’ after life turns to some normality for the majority of people .

The AWARENESS video is about 5 minutes long 

Click HERE for a short video with contributions by Michael Harding, Sr. Stan and Nuala O’Connor reading and reflecting on the writing by Corina Duyn, in aid of ME Awareness Day 2020
(5 minutes)

For individual recording, please see:

Michael Harding on ME Awareness Day

Click HERE to hear three very short poems from ‘Into the Light’ by Corina Duyn, 
read by writer and poet Nuala O’Connor 

Click HERE for some very thoughtful reflections on ME and Corina’s poetry by visionary, and author Sr. Stanislaus Kennedy (Sr. Stan)

Monday 11 May 2020

‘Leave No One Behind’ - ME Awareness Day 2020

"There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease."

Thoughts on ME & Covid-19 by Corina Duyn

Woman in wheelchair seen from behind- facing a gate. “Leave No One Behind” ME Awareness Day 2020

‘Leave No One Behind’ 

For the past seven weeks - 55 days - life as we knew it has changed forever. A virus which nobody can see, but is very much lurking in every corner of the world, made us stay at home. Many people had to adjust to this sudden change in their daily routine. Ways had to be found to work from home. Schools closed. Many teachers had to learn in record time how to bring their classes online. Zoom is the new buzzword. The undervalued and often underpaid arts became the lifeline for many to deal with lockdown. Theatres, museums, concert halls and art centres opened their doors to the virtual world. 

Many people experienced what it is like to be housebound. For many, the first few weeks were certainly a mixture of fear and a sense of novelty. Suddenly there was time for all these jobs which for years had been put on the long finger. Homes were tidied, fixed up and painted. Gardens were attended to, and vegetable beds were created. Although the duration of this lockdown is not set in stone, we all know at some point it will end. 

For the many, many people with chronic illness and disability, this time has been of mixed emotions. For me personally I spend many of the last 22 years housebound due to becoming ill with Myalgic Encephalomyelitis (M.E.). The start of this long journey was a viral infection in my brain during the summer of 1998. 
I googled the timescale to compare with the current lockdown which started in Ireland with the closure of schools on the 13th March. I have clocked up just over 8000 days, which is the equivalent of 1143 weeks. Unimaginable, even for me, although I’ve lived it.

The first few years I was mostly bed and house bound. I had a few years of gradual improvement in which I partook at life outside my wall at times. I believed eventually I would recover and return to my pre-illness life. It never happened. Before my illness I was a full time Doll Artist. I made sculpted figures and puppets for shops, exhibition and corporate commissions. I taught students from Ireland and abroad in my studio. The months before the sudden unset of illness I was teaching a wonderful group of teenagers in a group-home. It is hard to imagine that these amazing young people are most likely now parents themselves of teenagers.

So, lockdown...

Why did that bring a sense of unease in my heart and mind? Possibly because after a two your long battle with the HSE I had finally managed to be awarded full PA hours (Personal Assistance) to have control over my life and to also be allowed to leave my home with my PA. Due to the bizarre thinking of the HSE Disability and Social Care services I had been held ‘hostage’ in my home by them. My Home Care does exactly what it says on the tin: Care in the Home - not outside it. (See for a synopsis of this long senseless journey.

The irony is that a week after I finally secured full control over my care the general lockdown started. So my newly found freedom, my re-emergence into the world, was halted before I had the opportunity to fully experience it. 

In terms of Covid-19, I had great concerns that my PA Support might be curtailed or even canceled. What if my one of my carers get ill? What if I get ill? The worry of ending up in a care home again, was very real. The memory of suddenly being taking into care last year still tightens my heart, and brings me close to tears. 
However, with my two wonderful PA/carers we found ways to talk about the possible scenarios. We managed to all stay well. We settled into a new routine - including reconfiguring some of the living spaces in my home and studio.

The other unease is deeper, is older. 

During this lockdown time the world became accessible via video links. A lot of the requests I made especially during the past two years are now suddenly possible. Being ‘Disabled’ became a mainstream concern. Disabled by being unable to leave the home. Disabled by having to wear mask. Disabled by not being able to be among friends and family, or to attend work or college.

For a long time I requested if my neurologist appointment could be done via skype. I was too unwell to travel the long distance. The two to three hours waiting time at the hospital for a ten minute consultation were just outside of my reach. This wasn’t possible. I asked again 6 months later (February), and it was kind of agreed but it never happened. Now people have consultations over the phone...

During the two year senseless, frustrating fight with the HSE to obtain PA hours to support me to live independently at home, I requested access to online counselling support. This was not possible. It could not be done. The fact that I could not travel, that I had no accessible transport, that I had no access to a PA, that I could not sit up in a chair for an hour all fell on deaf ears. Online counselling was simply not available. End of story.

Enter Covid-19 and the HSE is spending over a million euro to roll out online support for mental health. Suddenly there is an understanding that being stuck at home is actually very challenging to one’s mental health. 
I am pretty good in my own company and take great pleasure from nature around me and having access to my creative mind. But yes, I too climb the walls at times and long to be part of a more normal world. 

I feel that many people with chronic illness or disability have been screaming at the government and the HSE that directives and supports need to be put in place for this neglected part of society. Nobody listened. 

In 2013 I took the brave step to go to college one night a week. Disability Studies at UCC. It required more travel than my body was capable of doing.
After a few weeks my body gave up, I got extremely ill. But as I had truly enjoyed the course so far, I made the request if I could partake in the course via video link. Oh no! This could not be done under any circumstances. Privacy was an issue. So, as one of two people with a disability on this course, no access changes were made possible. Now, of course all courses are possible via video link.

So, yes. My thoughts on this current lockdown are in a state of confusion.
On the one hand I hope that people might understand our lives often lived in isolation a little better. And yet I can’t see this truly happening. Being ill and housebound is still very different from being healthy and housebound. 


I do hope that the online access changes made in our global society remain in place so many people with disabilities and illness can be part of the greater world. For me, I have not been taking part in this global change as my energy is not sufficient to spend many hours online.

The 12th of May is International ME Awareness Day. Maybe more people will stand still for a few minutes and imagine how being housebound for months, years or decades feels like. As I am a co-founding member of ME Advocates Ireland, I very much advocate for our motto “Leave no one behind”. We are asking those in power to learn from this Covid-19 experience and start to listen to people who have lived in lockdown mode for a very long time. Please keep the virtual access open after life turns back to some level of normality for the majority of people. “Leave no one behind”

ME Awareness Day Ireland: How to be part of it:

Corina’s Creative Journey through ME

UPDATE (12-5-2020)
Hear an interview on Community Radio Castlebar talking about this article

Friday 1 May 2020

May - ME Awareness Month

ME Advocates Ireland (MEAI) would very much like to mark ME Awareness Month as well as International ME Awareness Day on May 12th and involve you in a few actions to mark the day & ME Awareness Month. We also want to tell you that you have not been forgotten & you still have opportunities to have a say despite the current situation. For obvious reasons we will not be holding the annual ME Awareness event this year. 

We normally hold an annual demonstration outside Irelands Government Buildings at the Dáil on or as close to May 12th as possible. The support over the last few years has been immense both before, during and after the event. 

This year is slightly different and we’ve taken everything online in the same way that the rest of the country has taken work and education, counselling and therapy as well as medical consultations online these last few months.

Perhaps through the crisis others will come to understand what having ME really means to our way of life.
They will never fully understand what it means to have Severe ME though. 

We will fight on, hard & all as it is.

Hopefully we will find support to a better understanding of ME, to appropriate care, to treatments and a cure.

Action 1
The first action will be an opportunity to send a single message that you would like to get across to the HSE, Government, and others.

We are interested in determining the societal impacts of Covid-19 pandemic & self-isolation on people with Myalgic Encephalomyelitis (ME) & we invite you to write something brief to report on the nature of your current situation. 

What has changed for you during the Covid-19 lockdown in relation to
- daily life & routines incl sleep, health, diet, shopping?
- support from family/friends?
- stress, worries, fears & anxieties? 
e.g. fear of having to go into a nursing home when carer help becomes unavailable during the Pandemic/fear of getting Covid-19, & worrying if medics would understand how to manage me in the context of ME/what happens if I become ill, who will look after me?/fear of having to go to A&E
If you are reliant on care have there been changes that affect you e.g. with regards to carers &/or PAs? 
Describe any current or potential level of inconvenience/disruption/discomfort.


MEAI would like to share your information piece on MEAI’s social media pages as a record of how the current situation has affected you as well as a way of raising awareness of Myalgic Encephalomyelitis & the change to your situation as a result of Covid-19. (NB you can remain anonymous if you wish to do so as most of our platforms are public)
We will collate your responses for the Working Group, for the HSE & the Government. There will most certainly be a national review post Covid-19 & it would be useful to feed your information in one way or another. 

We are inviting you to have your say 

Action 2
The second action will be to highlight our invisibility in the eyes of the HSE and Government on a silhouette image - we have no voice; we have no visibility and we have been suffering for too long without appropriate supports.

You are invited to send a small piece of information about you stating the message you would like to send to the HSE & the Irish Government, to include the few lines below: - 

I am invisible.
I have been unwell with ME for ___ years.
I have had a ME diagnosis for ___ years. 
I have no voice and no say with regards to implementation of guidelines/medical supports/other
I am missing vital supports e.g. a ME-aware GP and a ME-aware consultant, Disability services,….

(You may add to the above piece if you wish but keep brief please)

Your information will be displayed on a silhouette image with the hashtag #LeaveNoOneBehind included on the well as a blue ribbon.

Action 3 
Help spread this year's ME Awareness message by adding the 'Leave No One Behind Twibbon frame to your profile pics on Facebook & Twitter.

This year's ME Awareness theme  is #LeaveNoOneBehind. We hope that when the current crisis is over that our patient community will be remembered and that appropriate steps will be made to take care of people with ME and give them health equality that other patient groups are used to.

Twibbon Frame links: -

Twibbon frame for FB
Twibbon frame for Twitter

This years Twibbon Frame was especially commissioned for us by Art on a Mission. 


YOU can participate and advocate online this year
• by writing a piece to send a message to the HSE, Government & others re your current situation and the difficulties you are experiencing, especially during Covid-19. This can be as long as you wish
• by sending a message of solidarity & support on social media using the hashtag #LeaveNoOneBehind
• by using the specially commissioned Twibbon frame on your profile pics (links below).
• by sending us a short message for the HSE & Government re the change(s) you’d like to see that would help you and others live better with ME.

It’s so important that we continue to fight for health equality despite the current crisis and that we #LeaveNoOneBehind

Where will your work be displayed?
MEAI will display all images together with your piece of information on our social media platforms.  Again, please know in advance that our pages are public & you can keep your anonymity by leaving out your name. Your image will be masked by us. However, if you wish to add a mask to your own image or to provide a new photo while wearing a mask please do so. 
Please feel free to do one or other, or both actions described above, though we would encourage people to do Action 1 because of the importance of providing information to HSE & Government as well as the Working Group.

Where to send your work
Please send your work on the two actions including your image for Action 2 before May 12th (so we can display on ME Awareness Day), to email address: - or to ME Advocates Ireland FB page via messenger button or add below in comments if preferable.


Important Message from ME Advocates Ireland
We hope that everyone will know that that is not in any way at all to take away from this current deadly situation the world finds itself in. 
People are justifiably consumed by the current situation & it is a horrendous time for us all, but we cannot ignore that there are 1000s who continue to suffer disabilities & severity of illness without appropriate care, & possibly without the care of family or friends, PAs or carers... basically in complete isolation suffering with a ceaseless chronic & debilitating condition.

Information created by team MEAI, compiled by Moira