My wife was finally diagnosed with Chronic Fatigue Syndrome at the start of 2007 after being ill for over a year.

I’ve been wondering whether I should write something about living with CFS/ME, reflecting on the last year.

But, as ever, Rachel has gone one better than me.

Check these short videos out if you have the time.

If you do go to the blog, have a look around the rest of her work too.

Rachel’s use of photography, drawing and painting is far more eloquent than anything I can produce.

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4 responses »

  1. Rachel M says:

    I would like you to talk about ME/CFS by your own words and knowledge. Because I feel that it is more powerful when healthy people start talking about the illness, especially you are a journalist.
    If you are a member of OneClickGroup (http://health.groups.yahoo.com/group/THEONECLICKPROTEST/), you will see how many so called journalists published articles about ME/CFS based on wrong information or no evidence. They not only push our suffering to further struggle, but also taking away our hope of finding the cause, effective managements and cure.
    I believe that the right awareness will bring compassion. With the compassion, something good will come to us. At the moment, media is actually harming us by spreading the wrong information to public. 😦

  2. Paul Groves says:

    Hi Rachel,

    I am going to write something. I must admit I’m finding it hard because I am so close to the subject. Remaining largely outside the subject I’m writing about is so much easier.
    But you are right, the bulk of the media coverage of this is shameful. A lot of it is simply lazy journalism, rather than being deliberately malicious – but that’s even worse.

  3. Rachel M says:

    Hi again Paul,
    Please don’t feel pressure from me. I know you will write it when time is right.
    I can also understand it is a difficult subject to separate your emotion and feelings.

  4. Rowena Magdan says:

    Your ‘On the Blog’ bit in the Guardian resonated SOOOO strongly with me. I have ME/CFS and my husband works from home .
    How often have I used those very words – it truly wasn’t meant to be like this!
    I’m so lucky that Sam is able to be supportive. I believe that only those who either have it or live with somebody with ME can ACTUALLY know what it’s like. I used to be a mental health nurse and the reactions seem to vary between incomprehension and (more aggravatingly) excessive concern.

    Thanks

    Ro

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