ME/CFS: an invisible illness

mecfs

I don’t have a vast number of Facebook friends. Yet three of them     have  participated in different fundraisers for cancer research/support in the  past eight days.

 

I know lots of people who have had cancer – my husband, my sister in-law, a cousin, work colleagues, friends and friends of friends. Most of them are still alive and, apart from check-ups, living a normal life.

My daughter has had ME/CFS for fifteen years. She is among the 25% of those with ME/CFS who are “severely affected.” For her this means pain, social isolation and dependence on us for support while her brother, her friends and peers are getting on with life. She can get out occasionally and she doesn’t require tube-feeding, so she remains better off than some. But her need to move home for support has scuttled our retirement plans.

If you get a diagnosis of cancer there are treatment pathways and support groups. People bring you casseroles and give you hugs.

If you get a diagnosis of ME/CFS you’re told that there is no treatment and no cure. And that’s if you’re lucky enough to get a diagnosis. People are still told it’s a psychiatric disorder (but hey, they said that about asthma fifty years ago). Snake oil merchants abound and it’s up to you try to sort out what can help your symptoms. Usually you just muddle along. If you have someone to help you through the maze you’re lucky, because ME/CFS will also affect your cognitive function.

I don’t wish either cancer or ME/CFS on anyone. Nor any of the many other misunderstood “invisible diseases.”

I just wish that funding was fairer, and that society would realise that, however scary cancer is, these days most cancers have a pretty good cure rate if detected early. ME/CFS is finally gaining international recognition. There is some promising research into what triggers it – including that from Queensland’s Griffith University. We can only hope that they – and other international centres with rigorous protocols and good results– get the money they need to continue to unravel the mystery.

NCNED 2015
National Centre for Neuroimmunology and Emerging Diseases ( NCNED) Queensland, lit up for ME/CFS awareness. May 2015

Further information on ME/CFS:

http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases

http://www.emerge.org.au

 

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4 thoughts on “ME/CFS: an invisible illness

  1. Dear Sally…. This not only affects Jamie but also your family and to some degree your friends and it is a constant in your life. I can imagine that most of your waking time is centred on helping Jamie and wondering, wondering . I would be happy to come and sit with Jamie or take her for a walk while you had some respite. I am not available every day due to other commitments
    but we could discuss the pros and cons. Maybe every little bit helps?

    Liked by 1 person

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