Reflection on a Life taken by CFS

Inquest implicates CFS in death

A couple of weeks ago I was upset to read of the death of Lois Owen at the age of 34 from Chronic Fatigue Syndrome (CFS), but I was able to take something away something that possibly could be seen as a slight ray of sunshine.

A report of the inquest into her death published in the Derby Telegraph illustrates that CFS far from being an excuse for lazy people to drop out. Here was a young woman who while she had CFS went to University and graduated with a first class degree (Do you have any idea how hard that is). She wrote a book and also set up her own business. Does this sound like a lazy person. I don’t think so.

Her family and  health care team took her illness seriously. Rather that CBT and GET which a great number of people with CFS have found to be ineffective, they recommended rest. While recent (poor) research doesn’t agree with rest  or pacing a lot of people in my experience find this to be the best way of managing their illness. The benefit of pacing is seen in a survey carried out by the ME association. (pages 8,9,10 make interesting reading)

The Ray of sunshine I was speaking about. Well that is bitter-sweet, but one of the causes of her death was listed as CFS. I hope that now it is further acknowledged that CFS has the potential to kill, or at least is seen as something that can contribute towards someones death.

I also hope that politicians, heath boards and health policy makers will start to take greater notice of the people with CFS and start lobbying for and finding money for research into a diagnosis and treatment for this debilitating disease.

Through twitter I’m going to pass this post  along with the inquest report to Scottish government ministers with a heath remit. Their details are below.

I’m going to start with

  • Nicola Sturgeon (@NicolaSturgeon) MSP, Deputy First Minister and Cabinet Secretary of Health and Wellbeing.
  • Michael Matheson (@MathesonMichael),MSP, Public Health Minister in the Scottish Government
  • Shona Robison (@ShonaRobison), MSP, Minister for Public Health

Why don’t you join me?

 

Please note

  1. I had reservations about publishing this, but after talking to more people with ME/CFS and hearing some of their stories I decided to.
  2. I have only referred to CFS (not ME or CFS/ME) as this is what’s in the inquest report.

 

 

One thought on “Reflection on a Life taken by CFS

  1. Thank you for posting this.
    It is shocking that the seriousness of C.F.S/ M.E.
    is still not been recognised fully.
    Ive had m.e. for 23 years i become extremely ill with it in early twenties , i wasnt lazy, three jobs to fun my college course…I have been self employed for 12 years but its through a lot of pacing, rests and effective time management..ive had several relapses during that period…

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