Remembering Eimear Forde

We are writing with heavy hearts to share the news that one of our own has passed away.

It is with our deepest sorrow and great sadness that we inform you of the death of our beloved friend and fellow patient Eimear Forde last week. 

Eimear died peacefully on Easter Monday. 

Our deepest condolences to Eimear’s parents, her three children, their dad, family members, friends, former colleagues and to her friends in the ME community. 

Rest in peace Eimear. 

Suaimhneas síoraí dá hanam 🕊

Death Notice: 

https://rip.ie/death-notice/eimear-forde-galway-loughrea-592067

🕊

Eimear contributed so much to our ME community, sharing information about Severe ME. 

She was resilient despite chronic ill health, spoke up and asked questions about Severe ME all the time raising awareness of the cruel, challenging and horrendous aspects of Severe ME.

🕊

We commend Eimear for the support she gave to others, for raising funds and awareness for ME, a challenging sacrifice when she was so unwell.

Eimear will be forever loved and always remembered by her heartbroken friends in the ME community in Ireland and internationally.

Launching our ME Awareness Campaign for May 2025 - 'bring ME out of the shadows'

     

Launching our ME Awareness Campaign for May 2025

 'bring ME out of the shadows'

May is Myalgic Encephalomyelitis (ME) Awareness Month which is just 3 weeks away.

What is ME Awareness Month?

ME Awareness Month brings the global ME community and their supporters together to raise awareness, share stories about life with ME and educate others about the challenges for individuals living with ME.

Please help us to raise awareness and educate others during ME Awareness Month 2025 by

1. liking, sharing and commenting on our daily awareness posts.

2. taking part in our awareness activities if you are able to.

What is this year's campaign?

ME Advocates Ireland's May awareness campaign this year is about bringing ME out of the shadows -

1. about informing you about ME and particular supports if you are newly diagnosed with ME, or if you have had ME for some time;

2. about educating others about ME including advocates, carers, family members, healthcare providers and community support staff;

3. and about including 'OTHERS LIVING WITH ME', i.e., carers, advocates, family members, friends and any other supporters.

We will be using the hashtag #bringMEoutoftheshadows on our posts and in our conversations.

How can I join this year's campaign?

ME Awareness Month activities will take place throughout May to involve you or others living with ME - your carer/advocate/family member/friend/supporter.

If you or others living with ME would like to participate in our awareness activities during May, please see all five options below.

NB: We are aware that some people with ME may not be able to participate in any of our suggested activities. We hope that others living with ME will help you with an activity or participate on your behalf, and for themselves too. We recognise the importance of others living with ME and their enormous support to ME patients.

Awareness Activity Options

The first three activity options, 1-3, are more inclusive for people with quite limited function; option 4 and 5 require more input and are aimed ONLY at those who are able to manage them.

We encourage you AND especially others living with ME to be involved in as many options as possible, if you can.

1. Support awareness posts

You can support the 'bring ME out of the shadows' campaign by interacting daily with the awareness posts on our social media pages, with the goal of raising awareness about ME and supporting our collective mission to enable and empower those affected by ME. All you need to do is like, share or comment on our daily posts.

2. Hashtags

You can contribute to this year's awareness campaign by using the following hastags in your own awareness posts or when you share or comment on our posts:

#bringMEoutoftheshadows (hashtag bring ME out of the shadows)

#MEawareness (hashtag ME awareness)

#MEawarenessmonth (hashtag ME awareness month)

3. Twibbons

"Twibbons" are designed to visually express your support and to raise awareness of a particular issue or campaign.

Our campaign theme this year is 'bring ME out of the shadows'.

The slogans on our Twibbon choices include all severity ranges; they are:

'Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Very Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Very Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Profound Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Profound Myalgic Encephalomyelitis - Shadows of Our Former Selves'

Please use a 'Twibbon' image of your choice as your profile picture on your social media pages throughout ME Awareness Month. There will be a good choice of images to choose from.

(We will share the twibbon choices on May 1st)

4. Short Story Campaign: 'Life with ME' - bring ME out of the shadows'

The theme for the Short Story campaign is 'Life with ME - bring ME out of the shadows'.


We are calling on members of our ME community in Ireland to take part in an online short story campaign to mark ME Awareness Day, May 12th, 2025.




How you can be involved in the short story campaign

Whether you are a patient or other person living with ME you may wish to highlight what you want others to know about your life with ME to 'bring ME out of the shadows', a piece which could include your current concerns or concerns for the future.


You can write a short piece OR 5 sentences about your Life with ME.




What individuals with ME could write about

- Many individuals with ME lack knowledge about their illness when first diagnosed and experience lack of knowledge among healthcare providers and in some cases suffer from stigma and gaslighting.

- As well as losing good health and finding that there are no clear healthcare pathways, people with ME suffer many losses - they lose careers, financial security, hobbies, friends and family; they lose the ability to go on family holidays and to attend family events.

- Despite the multiple challenges they are living with, people with ME constantly feel isolated in the shadows because of disabling ill health, the enormous losses endured, and because of the lack of appropriate healthcare pathways.




What others living with ME could write about

- Others living with ME. e.g., carers, advocates and family members could write about the issues they face as they try to support the person with ME, to highlight difficulties in 'life with ME'.

- Or they could write about the person they are supporting.

Please write a very short piece or send 5 sentences if you are able.




Where to send your short story / 5 sentences

Please send us your short story / 5 sentences via email to: info@meadvocatesireland.com

or send it to us via private message on any of our social media pages like this one.

We will do the rest and publish your piece anonymously on May 12th, ME Awareness Day.




Important Details

Short Story to be submitted by May 10th, 2025
Short Story Launch: May 12th 2025




Exceptions

We are aware that individuals do not have the functional ability to write a short story; if you are able, a few words or one line will do instead. Or maybe a carer or family member can support you.

Writers!!

We are aware that we have writers in our ME community...so if anyone wishes to write a longer personal story, you are welcome to do that.
We will publish your longer story anonymously on May 12th.

5. Your Story Through Art Exhibition - 'bring ME out of the shadows'

ME Advocates Ireland (MEAI) are calling on artists living with ME in our community in Ireland or elsewhere around the World to take part in an online art exhibition to mark ME Awareness Day on May 12th, 2025. Artists living with ME include patients, their carers, advocates, family members and friends.

We invite you to share your experience of life with ME through art with this year's themes in mind - the themes of this year's art exhibition are 'Life with ME' and 'bring ME out of the shadows'.

The artwork will depict your ME symptoms or experiences, or your hopes for better acknowledgement and understanding.

Understanding life with ME can be challenging for some people and it can be difficult for others to fully understand the impact of ME on those living with ME.

All types of artwork will be accepted - painting, drawing, photography, knitted/crocheted work, sculpture, pottery, other.

To submit your artwork

Please take a clear photo of your artwork or ask someone to do that for you and send it by email to info@meadvocatesireland.com or via private message on any of our social media pages.

Important Details

Artwork to be submitted by May 8th 2025.

Online Exhibition Launch: May 12th, 2025.

Online Exhibition runs: May 12th - May 31st.

"When you're working with your hands, conversations will happen"

- Caroline Schofield

Developments in our ME Space

We will update you about the developments in our ME space during the last year including details about the HSE's response to the ME Community’s incredible Open Letter campaign launched on May 12th 2024. You can still sign the Open Letter if you wish: bit.ly/4doeHpS

We would be grateful if you could support us and the ME community during ME Awareness month from May 1st to May 31st 2025 to 'bring ME out of the shadows'.

#bringMEoutoftheshadows

#MEawareness

#MEawarenessmonth

What will ME Advocates Ireland (MEAI) do during this years ME Awareness Month campaign?

We will:

- share a choice of twibbons on our social media pages for you to choose from;

- share awareness posts on our social media pages throughout May;

- remind you of the hashtags we will be using and encourage you to use them too;

- remind you that you are invited to take part in a short story campaign & then publish your personal short stories on May 12th, ME Awareness Day;

- remind you that you ate invited to particpate in an online art exhibition & then hold an art exhibition of your art work on May 12th, ME Awareness Day;

- update you about the developments in our ME world during the last year including sharing the HSE's response to the ME Community's Open Letter campaign with you;

- signpost useful information about ME as well as community supports on our webpages;

- direct you to useful organisations/websites/support groups.

#bringMEoutoftheshadows

#MEawareness

#MEawarenessmonth

HSE National Myalgic Encephalomyelitis (ME) Clinical Guideline

 

News from Ireland

HSE National ME Clinical Guideline

In an extract from a recent edition of The Times newspaper (Ireland & UK) the HSE stated that it was developing a national clinical guideline for ME in collaboration with patient and service user partners, supported by the Department of Health.

"Currently there is no consistent approach to treatment of people with ME and management is based on treatment of some of an individual’s symptoms. The clinical guideline aims to address this," a spokesman said.

"People living with ME may see doctors from several different clinical specialties, depending on the symptoms they experience and the relevant speciality into which those symptoms fall, eg neurology, cardiology and oral health. There are no specialist doctors within HSE services who manage the complex pathophysiology of ME in its entirety, and knowledge and experience of managing ME is variable."

- An extract from The Times newspaper (23/02/25) from an article about a triathlete affected by Myalgic Encephalomyelitis (ME)

Full Article

Please see the full article in The Times newspaper, an article about James Walton, ME sufferer from Ballerin, Co Derry entitled 'How a Promising Triathlete was Left Bedridden by Cruel Disease', written by Julieanne Corr and published on Sunday February 23rd 2025

James Walton was aiming for the world championships when he was suddenly struck down by ME. He is now calling for more research into ME.
Photo by Gordon Thomson

'The Lost Years: A Personal Journey'

 

    "Myalgic Encephalomyelitis is a complex condition and baffles most doctors. It is rarely taught at medical schools despite it being recognised as a neurological condition by the World Health Organisation in 1969. Some doctors still have not heard of it and recently a doctor said so and then asked how to spell it.

I found it difficult to be accepted by the specialists and it was only when l developed heart problems that l was treated with respect by local cardiologists.

However, a Professor of Neurology at a local hospital acknowledged ME as a legitimate, physical illness and was very supportive.

When l saw him back in 1998, he acknowledged that the brain is heavily implicated. Since then, inflammation of the brain has been connected to the illness. 

Some doctors seem to be out of their depth which has resulted in patients like me continuing to do research. Until there is wide spread acceptance by the medical fraternity, we will be subjected to scepticism and dismissed as having psychological illnesses when it is not the case."

We are saddened to hear of the death of our friend Kathy Collett who suffered with Myalgic Encephalomyelitis (ME) for three decades.

Our condolences to Kathy's family, friends and members of the global ME community; she will be sadly missed.

The quote above is from a personal story, 'The Lost Years: A Personal Journey', written by Kathy in 2019; please see more of that story via the link below. The full piece from ME Australia's personal stories section recounts Kathys’s difficulties navigating support, understanding and healthcare for ME.

The Lost Years: A Personal Journey -

https://meaustralia.net/the-lost-years-a-personal-journey/

"We are so sorry to hear about Kathy, the passage you quote from her is brave and heartbreaking. Tragically ME is an illness that is extremely difficult to comprehend from the outside and almost impossibly hard to identify from the inside, there can be such profound levels of cognitive and physical dysfunction . 

Reactions are often confusing and opposite to what would normally be expected rendering those most in need living invisible, secret tormented lives." 

- Greg Crowhurst

Rest in peace Kathy