ME/CFS: The Real Story

ME Awareness Week takes place from 6-12 May. Held each year, it aims to improve awareness of ME and raise funds for research into this painful condition.

ME/CFS is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. There are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.

When researching and writing an article about ME/CFS to illustrate how it affects people, the first reply to my request for information from a person suffering with ME/CFS went exactly like this:

“ME destroyed the hopes, dreams and plans I had for my life. I am left trying to salvage the best from a bad deal.”

After making this comment the sufferer went on to say: “I wouldn’t want my name and certainly not my photograph used. The one thing I’ve learnt from 27 years of it all, is that the declaration of ME doesn’t necessarily generate sympathy or compassion from the listener. In fact it’s quite likely to generate hostility and disdain. We are in a battle, which we aren’t winning, and I have learnt its best to keep one’s head down.”

The ME Association want the UK to be a better place for people with M.E. so they campaign for it be widely recognised and taken more seriously. They also fund biomedical research into the causes of the illness – hoping one day that science will find that elusive cure.

Tony Britton, of the ME Association said ME blights lives: “From suffering a flu-like illness that never seems to go away, to delayed recovery after any form of mental or physical exertion and being bed-bound, ME is debilitating. Those with the condition can be plagued by bright light, loud noises and in some cases, fed by tube because the swallowing muscles do not work. Any number of allergies and sensitivities wash around in its wake, with unpleasant reactions to certain foods, cleaning fluids, bowel and bladder disorders and sensitivity to extremes of temperature.”

Action for M.E. is an organisation led by people with M.E., for people with M.E.

Action for M.E. CEO Sonya Chowdhury said: “There continues to be debate about which criteria to use to diagnose the condition and who we are talking about when we use M.E. or CFS or M.E./CFS. No doubt this will not be resolved anytime soon. But this should not prevent people receiving care based on their symptoms and experiences now, regardless of what we know about the causes, the pathology of the illness, the criteria used or the names we use. Clearly we need a better understanding and therefore guidance on groupings or subsets; we need more treatments and for them to tailored to the specific subsets; and we need a better standard of health and social care and benefits that properly support people who need them. Without any question, we need more high quality research and the mainstream funding to make this happen.”

This is the reality for one woman with severe M.E., featured in “My life stopped…” Voices from Action for M.E.’s 2014 survey:

“I have gone from a fit, healthy and active 37 year old with a job that I loved and a toddler I adored and done everything with, to being bed bound/housebound most days and completely reliant on my mum and husband should I wish to leave the house as I have to use a wheelchair. I’m about to lose my job. My daughter, who will be three in April, can’t ever remember her mummy being well. I require a great deal of help and support around the house and to help me care for my daughter. My journey so far with M.E. has been soul destroying/heart-breaking/devastating. I’d give anything to have my life back.”

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