Friday 26 November 2010

Trumpet Blowing

You've probably all seen the Guardian CiF article by now, but in case some of you missed the brouhaha (how good is that word? Possibly my favourite.) it's quite a good story.

A few days ago, I logged onto Twitter to find a page full of tweets and retweets from Comment is Free - they had posted the link to my blog with the tantalising question "Does anyone know this blogger? Do you have contact details?" I replied that it was me and they asked me to write a piece on pain management in long term illness.

Of all the subjects they could have picked, this is the one closest to my heart.

It is published today on the Guardian website

Without the support you've all shown, it wouldn't be there, so thank you.


  1. Sue,

    With none of the support shown here, you would still have made it. See it as much less to do with our suport and more more to do with your excellent thinking and writing skills. So many patients probably went through what you go through. But your get up and go trumped all.

    That does deserve a trumpet noise! Well Done :)

  2. I don't know how to type trumpet noises, so you will have to imagine one.
    I hope this helps you on your way to a successful career as a writer.
    Good Luck!!

  3. Brilliant article Sue.
    Well deserved.
    Could this be the star of a new career?

  4. I meant of course the starT of a new career.
    No, on second thoughts. I like the first version better. ;)

  5. Sue,

    Very well written, thought-provoking article - you should be proud.

    Although I'm fortunate enough to be in good health now, a couple of years ago I suffered from an acute illness which involved serious pain for several months - I remember only too well the frustration involved in obtaining something that actually made a difference to the pain.

    Michael V

  6. Thank you, thank you my loyal UKPRers.

    You've been so supportive. I appreciate Eoin's kind support immensely, but I've always written but it's only actually being read now. Syzygy, Pam, Eoin and many more have actively promoted my blog, posting links all over the web.

    So "Thank You" again. (What's that quote Eoin about bosses only being the sum of their workers?)

  7. Sue....Right story, wrong paper. :-)

  8. Sue,

    I should send you this link. I was on the local telly news this week for Educational Matters... I'm the bloke at the end of the video [3mins] don't laff!

  9. Brilliant stuff Sue - and I was so glad when they got you on CIF. Well done... and long may it continue! :)


  10. Haha Eoin, let's get famous together, you do the polling/education stuff, I'll do the health/politics rants and Sunny there will have to watch his number one spot!!

    (Just kidding Sunny)

    Sunny was the very first person to pick up my writing so perhaps tonight's toast ought to be to him?

  11. My favourite benefit scrounger on pain management.

    I'll plonk this up on a few ME Facebook group walls if you don't mind SUe.

    Take care!

  12. Joe - Of course I don't mind, I'm really grateful!! I'm really really glad you're enjoying it.

    I'm really hoping to do an interview with someone else who is in the hospital. They have another misunderstood and doubted condition, and just like ME I really want to try to tell her story. This patient's view thing seems to be quite powerful.

  13. Thanks Sue.
    It's good to see your work getting wider circulation and reaching the heady heights of the pages of the Grundian - woooo!
    I hope you won't let all this fame and stardom go to your head and you forget who your mates are.

    "This patient's view thing seems to be quite powerful."
    - I don't want to take up your time with my grumbles Sue, but, the treatment of ME sufferers is a national scandal.
    It's a bio-physical condition but, for reasons best known to elements inside the medical profession, it was decided to start treating ME as psychaitric condition and have even tried to re-name it CFS = Chronic Fatigue Syndrome.

    Those who have 'CFS' are defined as a having a false belief that they have ME, which is a non-existent disease. I kid you not Sue.

    It's only lately that micro-biology has started to be taken seriously and only because of privately funded research in the US which has discovered only the third retro-virus ever, XMRV, which has strong correlations with ME sufferers.

    All academic proposals involving bio-physical research into ME, submitted to the British Medical Research Council over the years, have all been rejected, despite definite research leads and findings worth following up from overseas labs.

    Now ME sufferers have a lifetime ban on donating blood from the 1st Nov, but the reasons given by the government and medical authorities are laughable. Whatever we have now seems as if it may be in the national blood supply but the authorities don't seem to bothered about it.

    Sorry for going on.

    Take care.

  14. First Joe, PLEASE don't say you're going on!! I set this blog up specifically to encourage sick and disabled to share their stories. My aim is to compile a real body of testimony from disabled people and use it as a basis for developing patient led care.

    Every time someone like you writes a comment like that, it fills my heart with joy.

    I quite believe your frustrations with ME. My niece has it and has suffered too. Twenty years ago, Crohn's was treated the way ME is now and it's shameful that when doctors can't explain something, they unfailingly fall back on "It's all in the mind"