Tuesday, 12 May 2015

Guest Post from Joan - Open Letter to Irish Minister of Health

Dear Minister Varadkar
In this month of May, which is dedicated to Myalgic Encephalomyelitis (and specifically May 12th which is world M.E. day), I have decided to write to you to make a plea.
My foster son is 15 years old. He has been with me since the age of 4 and is as much 'mine' as if he was born to me. Until the age of 12 he was a happy, fit, outgoing, healthy, sporty young lad who loved life, loved his friends, loved school (except for the homework!) and loved his swimming and sports.
At the age of 12 he was struck down with Epstein Barr, chickenpox and a viral pneumonia - all in the space of a few weeks. He struggled for five weeks trying desperately to be well enough to get back to school and failing miserably every time. He eventually made a recovery of sorts and made it back to school in time to finish off his final year in Primary School. He entered into the summer with the full excitement of any young lad, looking forward to secondary school and becoming 'grown up.' 
After his first couple of weeks in school in Sept 2012 he picked up another virus that was going around the school. He became extremely ill and was in A & E several times. The simple fact is that, since then, he has never recovered. His diagnosis at the time was post viral illness, which over time moved to Chronic Fatigue Syndrome and which eventually became ME. He was diagnosed eventually by a renowned Paediatric ME specialist in the UK - Dr. Nigel Speight. There are NO specialists here in Ireland in this condition and patients and their carers are left trawling through the internet and support forums trying to find something, anything that can help. 
He has a range of very complicated symptoms from his ME. the most obvious of which was a complete bowel shut down. As a result he was hospitalised several times over the first couple of years. Eventually he was trained in how to manage his own bowel evacuations at home. His other symptoms include overall bone and muscle pain, painful muscle spasms, tinnitus, ongoing digestive problems, noise and light sensitivity, temperature dysregulation, disrupted circadian rhythm, chronic and debilitatating inability to create energy, post extertional exhaustion and increase in symptoms, cognitive difficulties, intermittent dyslexia, balance problems, short term memory problems, deteriorating eyesight, etc etc etc. There are almost too many to mention. 
He has never really managed to get back to school, save for an odd day here and there. The last time he was in school was in September 2014.  
My young lad is not just my responsibility. He is the responsibility of the State as he is in foster care and I believe that the State are letting him down by not providing us with the expertise to manage this condition. We, like many, many others, are left to trundle along, doing our own research and trying to get help from an international community. During his 'journey' with doctors and hospitals here, it was actually recommended at one point that he be started in Prozac, despite the fact that he had no signs of depression whatsoever. The reason given to me for this recommendation is that 'there was nothing else they could do but this'.  Imagine! Putting a 12 year old child on Prozac for a condition that has a biological origin! How dangerous and appalling is that? These are the kind of things that are happening to the 12000+ ME patients in Ireland on a daily basis and they are the result of neglect and failure to establish even the barest minimum of one  clinic and one consultant to manage this condition and learn about the latest international research.  
I am attending the 9th annual Invest in M.E. Conference in Westminister, London at the end of this month so that I might keep myself up to date on the most current international bio research on this illness. These are the things carers and patients have to do. We have to chase down the information ourselves. We do this while all the time caring for our loved ones. In my case I have had to reduce my working hours from 39 hours to 11 hours per week over the last three years. Poverty soon bites at your door when you have such a dramatic loss of income. 
I am pleading with you to consider the establishment of a clinic with a properly trained M.E. Consultant in situ. Someone who understands the pathology of this illness and who has a genuine interest in the exciting research emerging from the UK and the USA. Even if this only started at one day per week - it would be somewhere to start. There is expertise out there. Patients and patient organisations can help you in this regard. Both the Irish ME Trust and the Irish ME/Cfs Association have a wealth of expertise in this regard and perhaps you could make contact with them to set up a meeting? I would be happy to help with this.
Finally, as May 12th is International ME Awareness Day, could you and your colleagues please display blue ribbons? The Mansion House will be lit up blue on that day to support those with M.E. You can make the ribbons yourself or contact the Irish ME/CFS Association. 
Best regards
Joan Byrne

1 comment:

  1. These are the most heartbreaking of stories to read imo, it's incredibly unfair that young, bright children can have their future impacted by such a severe and misunderstood illness. I'm so sorry Joan, it is for people like your son that we will continue to advocate <3

    Happy May 12th friends,

    It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future smile :)