Wednesday 31 January 2018

We have had enough of the neglect of people with Myalgic Encephalomyelitis (ME)

 The Urgent Need for Recognition and Education

Christine Fenton, MEme, Moira Dillon of ME Advocates Ireland
Moira Dillon (r) with Christine Fenton (l)
at MEAI's AV Room Event

Myalgic Encephalomyelitis (ME)  is often called an invisible illness.  

Much of what I go through daily with ME is not seen by my closest family and friends. When I’ve been ‘active’ they don’t see the payback, I suffer. I’m in payback mode now after a few events I took part in last week trying to raise awareness about ME in an Irish Government Building in front of Government Representatives. This payback is medically known as PENE or Post Exertional Neuroimmune Exhaustion. PENE is the cardinal symptom and a defining feature of ME. It is a flare-up of symptoms after physical or mental exertion, which requires an extended recovery period. A relapse like this can last days, weeks or longer.

This coming April is the 11th anniversary of my relationship with ME. I was living life to the full until 2007. I had to give up many things including work as a Teacher in 2009 when ME. progressed after two long years struggling with debilitating symptoms. It all started after a seemingly innocuous virus, twinned with the unrelenting stress of two surgeries. I recall always being unwell with chest and viral infections in the few years prior to onset. It took six years to find a consultant who knew about ME. and was interested in treating a patient with ME.  

ME. remains misunderstood and invisible in the eyes of many of the medical profession as it’s not included in training in Irish Medical Colleges, despite the 1969 WHO classification as a neurological disorder. There is no national policy for ME., no training in medical schools, no knowledge among medics, no specialist, no treatment available, no standard criteria being adopted, e.g. the International Consensus Criteria 2011 - no healthcare pathway for ME. patients in Ireland.

ME is a disease that affects my body systems - energy metabolism, hormonal, nervous, endocrine, to name just a few. When I have an awful headache, collapse from exhaustion, ache all over, I’m the only one who knows this because I spend most of my time inside my home. I don’t have the energy to socialize very often.  Good management of my symptoms is vital to keep my symptoms in check and to prevent PENE. I practise the 'energy envelope theory' by self-monitoring and self-regulating my energy expenditures. By learning to pace my activity levels, I can stay within my “energy envelope”. I balance expended energy with available energy to reduce the frequency and severity of my symptoms as much as I can.

One of the hardest things to accept about having ME has been people’s misunderstanding and ignorance, that some people don’t take this neurological illness seriously enough. 

I’m mostly talking about primary medics and consultants. ME has been described to be as debilitating as late stage AIDS and MS and yet there is still ignorance attached to it. We do not have the energy to get through our daily lives never mind deal with the ignorance.

Not only do we see ME patients fighting what is happening to them, but we also see them fighting government agencies for access to care; the social stigma that has been given to the illness by poor science (PACE etc); irresponsible media coverage; and the huge lack of accurate information widely available to the public. The HSE has taken down inappropriate treatment guidelines from their website, after fellow patients repeatedly asked them to remove the inappropriate guidelines, but currently there’s nothing there to advise ME patients. We need the HSE to listen to the experts, foremost to ME patients and to the medical experts. We need them to look at the hundreds of worldwide scientific research data that would enable them to draw up appropriate policy for people with ME.

I am angry and saddened

I have friends with severe ME who are suffering daily but nobody knows they even exist. I am appalled by the absence of anything resembling humane treatment of these incredibly ill people, especially in the form of basic primary medical care. I am saddened but angry watching them suffer needlessly. I’m angry that the neglect of people with ME is so profound that some severe sufferers have turned to ending their lives, to escape the terror and the pain of their existence with ME. I see blue roses appearing as profile pictures on social media every time a person with ME has died. This has happened too often.

I’m angry that young people are losing their lives to ME.  The most common period of onset in young people is from about the age of 12 to 17 years, but children as young as 4 years of age have developed ME. It is unbearable that the world is losing those who never even got the chance to find out what they excelled at, or where their purpose was because their lives were stolen from them by an illness that makes them so profoundly ill.
A significant number of children and young adolescents with ME. can never leave their houses or their beds. This makes them voiceless. Their forced silence is not anywhere near as quiet as the silence of those who have the means, and the ability, to help them.

I am angry at the distress I see people with ME going through as they repeatedly experience and witness suffering and marginalisation as they fight to survive their disease. I am angrier at the trauma I see people with ME going through as they witness the death of fellow patients.
I’m angry that people with ME - sick, disabled people, are being kept in such a situation- have been kept in such a situation for decades. It is a result of a fundamental indifference and an ideology that disregards the value of the lives of sick people and considers the price of action to be greater than the cost of their suffering.

The fight is enormous, and I am sick, but I’ve had enough of the neglect of people with ME and will do my bit to help. It is my raison d’etre. 

I am a member of a group of patient-advocates, called ME Advocates Ireland (MEAI). A group of us advocates joined forces with our small reserves of energy to raise awareness about ME to protest the lack of government recognition and medical/public education about ME in Ireland; and to demand health equality for the thousands with  ME.


  1. Thank you Moire. Well said.

    I will continue to contact the HSE to see if they have come any closer to correct guidelines. I've only been doing that since June 2016 🙄 They have all the correct information. But at least they removed those dangerous guidelines. I'll do my best to keep the pressure on them.

    1. Gees, that comment was from me (Noreen).
      I think I've it changed now. Sorry about that.

  2. Well said Moira! I am equally frustrated and one of the housebound ME sufferers, barely having sufficient energy to manage the daily basics. I admire you for using what energy you have to raise awareness and I thank you from the bottom of my heart.

  3. This has taken me a lot of effort to write and I will no doubt suffer for it later on, but I wanted to write about my own experience. It is a brief summation and you will know, and understand, that there is a lot more to my symptoms, quality of life and experience of ME, than I have written below.

    My onset of ME was around 2003 (final diagnosis 2007) and I went through multitudinous hospital tests. My first GP refused to see me anymore saying there was nothing she could do for me. The second GP was more sympathetic and continued to try and establish what was causing the multiple symptoms I was suffering. He sent me for various hospital consultants and I was diagnosed with Fibromyalgia and IBS. I was put on pain killers that made the pain a little easier but caused the IBS to get worse.

    At this point I was so unwell that I had to give up my job that I had loved for 20+ years. This second GP retired and the third GP referred me to a ME specialist consultant. I was very lucky that such a consultant existed in my area as I know how uncommon they are. At last here was someone who actually understood my symptoms and he assigned an OT and we eventually managed to establish my baseline and how to pace in order to reduce PEM. I was now put on a different pain medicine regime, which made a massive difference.

    My GP, who knew nothing about ME, linked with the consultant to learn more about the disease and has now become the ME specialist in the practice. So I have been lucky, and although I am classified as having severe ME and am virtually housebound, and invariably bedbound, I have at least been diagnosed and supported by the NHS as well as possible.

    It is essential, imo, that every area should have specialist ME consultants with every GP practice having at least one GP with an extensive knowledge of ME.

    Good luck Moira in your efforts, but make sure you take care of yourself whilst undertaking this fight for recognition.

  4. Thank you all so much for your comments, and for stopping by at the ME Advocate Ireland blog. Best wishes to all.

    The MEAI team