A Massive ‘Thank You’ And An Update

16 Mar

What brilliant readers you are!  Thank you all so much for your supportive comments on yesterday’s post.  I can’t tell you how much it means to me.  I sometimes feel like we are living in a vacuum, coping with ill-health, no work, no money, and little support.  I haven’t felt like that today.

Thank you.

I want to address a few issues that arose from the comments. 

I don’t read the Mail; I linked to the article from a Google alert I have set up for all CFS items that appear online.  This particular article was written for their Science & Tech page.  The Telegraph also covered the Skiver app story, but the tone was not so low.

Making a formal complaint: I have to admit, it never occurred to me.  I have strong feelings about the right to free speech and a free press: Ms Rees is entitled to her opinion, however misguided I might think her, or how inconvenient that may be to me.  I had no compunction in availing myself of the right to upbraid her: freedom of speech works both ways. 

The reporter may have been insensitive – it was her ‘Poor you’ after the mention of CFS that so enraged me – but I’m not convinced she broke any guidelines, so I don’t feel I have the right to complain.  I do very much appreciate your indignation, however; and I hope you don’t think I’m letting you down.

What I did do immediately after posting last night was send the link to the MailOnline editor, with a request that s/he forward it to Ms Rees.  I had to laugh; the automated reply came back with this information:

Our Email Support Service is able to provide you with :

Information on CFS/M.E.
Details of local NHS services for CFS/M.E.
Support to help you cope with the illness
Support for carers

I also sent the Mail link to Action for M.E., a charity campaigning for better recognition of the condition.  They had this to say:

Like you, we took serious issue with the reports in yesterday’s media that make light of the ‘Skiver’ app encouraging people to use CFS/M.E. as an excuse to take days off sick.
We wrote to the Daily Mail and the Telegraph expressing our concern. We also wrote to the makers of the app itself, who have been in touch to apologise. You can read about this here: http://www.afme.org.uk/news.asp?newsid=1079

I was pleased to note that they had acted so quickly.  You can read the whole article at the above link but here’s the important bit:

A senior Gospelware representative has replied, saying:
“Please accept my sincere apologies if we upset or offended you or your members in any way. The app was meant to be a bit of fun, and from feedback I now realise that we got it totally wrong in using CFS in this case.

It hadn’t occurred to me to complain to the app maker for trivialising CFS, so I’m glad to know the people at AfME are on the ball.

I haven’t had a response yet from Gwyneth Rees; if I do hear anything, I will let you know.

Once again I’d like to say a big ‘thank you’ to everyone for your support; it means much more than you will ever know.

18 Responses to “A Massive ‘Thank You’ And An Update”

  1. slpmartin March 17, 2011 at 00:16 #

    As the kids say these days…’we got your back!’ 🙂


    • Tilly Bud March 17, 2011 at 12:06 #

      I know it, and it’s comforting. Thank you 🙂


  2. gigihawaii March 17, 2011 at 00:33 #

    You’re welcome. Hope you feel better.


    • Tilly Bud March 17, 2011 at 12:07 #

      I do, thank you. Much better to complain (politely) than to let it fester.


  3. nrhatch March 17, 2011 at 02:22 #

    It’s tough dealing with any one of the things that you’re dealing with ~ illness, financial worries, and being out of work really take their toll on our psyches.

    Glad that you got some positive feedback about your concerns.


    • Tilly Bud March 17, 2011 at 12:09 #

      The Hub is always saying ‘turn a negative into a positive’ and that’s what I try to do. No work but we get to spend time together and we are always there for the children or anyone who needs help. No money but that makes us appreciate the things we have got. The poor health is a hard one, but it showed our true characters and the value of our marriage, so something good came from it.

      Life is what you make it 🙂


  4. Paila Tohline Calhoun March 17, 2011 at 02:56 #

    So glad that there was such a “groundswell of support” from many sides, it seems! I also think that the Gospelware rep’s apology sounded sincere – hope it was, and that you soon hear from others. The kick-back response from the Mail was laughable! Oh well – free speech is a valuable and wonderful thing. Unfortunately, along with it often comes, inevitably, stupid speech.


  5. Cindy March 17, 2011 at 03:51 #

    What slpmartin said …


  6. Sharp Little Pencil March 17, 2011 at 05:19 #

    Linda, I find this shocking. As a member of the National Alliance on Mental Illness, I belong to “Stigma Busters,” an alert that comes to me when someone in the media trivializes or demeans the mentally ill (that includes myself, bipolar, PTSD, and the kitchen sink!).

    Perhaps the CFS group can do the same. In the meantime, lawsuits? Nah. Why make the lawyers rich? Just know that everyone in our community supports you. I didn’t know this was an issue in your family, so forgive me for not chiming in sooner.

    We’re all on this earth together, and the sooner we start thinking before we speak (or report), the better our world will be.

    Peace and solidarity, kiddo! Amy


    • Tilly Bud March 17, 2011 at 12:11 #

      Thank you, Amy. I think they do; their reaction to this small article was pretty swift.

      Thanks for your support 🙂


  7. Pseu March 17, 2011 at 09:59 #

    You did a ‘very good thing’ in bringing this to our attention, and thereby a wider audience. Like you I have my radar on for inaccurate and misguided reportage of various illnesses: my specific key ones are diabetes, autism and dyspraxia.

    My son is a Type I diabetic and I have been amazed at the misconceptions folk hold about this auto-immune, life changing,disease, even to the extent of thinking that maybe it was because he put on too much weight.

    A lot of public responses to various illnesses are due to poor info getting into the public domain through bad reportage – let’s stamp on it, and send out the right information.


  8. vivinfrance March 17, 2011 at 10:45 #

    Thank you for the comprehensive update, Tilly. I read all the links, and agree that while the Telegraph report was more restrained, it still left a nasty taste in my mouth.


I welcome your comments but be warned: I'm menopausal and as likely to snarl as smile. Wine or Maltesers are an acceptable bribe; or a compliment about my youthful looks and cheery disposition will do in a pinch.

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