On March 2nd 2015, I wrote this letter to Mr Varadkar (Health Minister)
“Dear Mr Varadkar and colleagues,
I hope your weekend was kind to you and the coming week equally kind.
My name is Marie Hanna and I’m a patient with ME – Myalgic Encephalomyelitis – also known as CFS – Chronic Fatigue Syndrome – Since falling ill to this disease at the age of 30, on the cusp of my 31st birthday, I’ve had to give up work, my hobbies, my social life.
I’m basically a retired 34 year old, only my life revolves around my home 90% of the time. I’m incapable of travelling or reading a novel or going to the cinema. My husband has become his family’s plus one at family events such as weddings. I made it to my own sisters wedding for a few hours during 2013, however, I ended up in bed for a week after it, the sitting and talking pushing me beyond my capabilities.
My one outing a week is to join my husband on our food shop. He drives and I follow him about while clutching the food trolley. You see, these legs can’t walk very far, or very quickly. As for driving, I don’t have the concentration to drive long distances anymore. I can drive to my local town, twenty minutes away, but only do so on a very good day and never do so for an activity other than visiting a friend for quick cup of tea or attending my GP. (Both allowing me sit and rest before returning to my car).
I’ve learnt to live with my limitations, I’m not cross that there’s no cure for me at present, I don’t dwell on all I can’t do. Living with ME has become my normal. But there are severe patients out there who aren’t as lucky as me. Patients who are bedbound, patients who haven’t seen the upstairs within their own homes in years. Within my own home, my bedroom is downstairs and I only climb the stairs as a must, those 14 steps a running race to this body.
There are children and teenagers missing school and college. I’m lucky, I was in good health for school, I received my degree from UL, I travelled, I worked abroad, I got married abroad, I was a member of my local athletic club, I ran races, I ran a marathon… I’ve lived. So retiring at the age of 34 having lived, makes this early retirement easier to live with. But try telling the parents of children their retirement in their early or late teens is okay?
As per the Irish ME/CFS Association (of which I’m a member), there’s an estimated 10,000 patients suffering from ME in Ireland. 25% of whom are bedridden. Not every GP in this country believes ME is a disease, some say it’s all in our heads. Thankfully, I have a GP who knows how ill I am, who does all she can for me. Not that there is much she can do, but listening and supporting me is the gold dust I require.
I’m writing asking you Mr Varadkar, in your capacity as health minister of this country, to please look into the 235 page report published this week (last Tuesday) by the Institute of Medicine in the US. A report detailing this illness, a report which has re-defined the diagnostic criteria, to better help doctors diagnose this illness and support their patients. A report that has also proposed a new name: SEID, Systemic Exertion Intolerance Disease. You see, the IOM believe the name CFS Is trivialising to patients, something I agree with. They also feel the term ME is lacking and so propose this new name, to encompass what it is we patients suffer from.
I ask that you issue a memo to the medical profession, I’m not asking you cure this, I’m not asking you to open a clinic or provide some magic aid to us. All I am asking is that you, in your capacity, speak with GP’s and consultants, share this report with them and help all within the medical profession understand the severity of this illness, the upheaval patients endure.
Early diagnosis is essential, as with any illness, and the quicker a patient can be diagnosed, the quicker they meet a medical professional who will sit opposite them and agree to share their journey, to help, to support, then the quicker the patient can learn to understand their illness and accept it.
On a second note, the IOM hope that by re-defining the diagnostic criteria, they will entice more medical research. At present the figures for research into ME isn’t overwhelming. Research is the golden key for long term answers for patients. Perhaps you can also look at this? I know our Government are presently working within a deficit, I’m not asking you allocate money. But you could look at what junior doctors are learning in relation to ME? Perhaps encourage more information to filter through to them? Whet the appetites of those considering moving into research? Also, it would be great to see some media coverage about this new name change and re-definition of criteria in Ireland.
All I ask is you consider my request.
I’ve attached two links below synopsising the IOM’s report for your attention.
Marie Hanna Curran”
On March 9th, I received this response from the Ministers secretary “Further to previous correspondence concerning re-defining ME, I wish to let you know that the contents of your email have been brought the attention of the Minister”. And today, I received the same response via e-mail. Not exactly mind blowing!
Responding with a second letter, I’ve asked the following:
Many thanks for your letter and e-mail advising the Minister has been notified of my request.
I saw recently that a motion was put forward at the Labour party conference in late February, calling on the Labour party to actively promote the development of a Consultant post for M.E./C.F.S. sufferers in the country. This motion was passed at the conference.
More details can be viewed here: http://www.labour.ie/conference/motions/detail/1424867360228971/
I’d very much like to know what Fine Gael thinks of this step and if they will more than match it??!
Perhaps my next response will be more fruitful!
***Update*** On March 31st, I received the following letter from Mr Varadkar’s secretary “The Minister for Health, Leo Varadkar, T.D. has asked me to thank you for your further letter concerning re-defining ME and to let you know that it is receiving attention.”