Today my news feed on all my social media platforms has been over run with #MillionsMissing.

It is all about showing support to those suffering with ME/CFS and showing what sufferers are missing.  The aim is to post a pair of shoes with the #MillionsMissing and write a note about what you are missing.


The picture of my Daughters shoes look brand new, unfortunately they are not :(, and I have seen hundreds of other pictures exactly the same, just different shoes.

#MillionsMissing represents the millions of ME/CFS missing from their careers, social lives and school and to represent the lack of research into this chronic illness. A lot of professionals refuse to believe this is an actual illness and lack proper training to diagnose and help patients. Also to promote social understanding from friends and family who have no idea what this illness is or how it affects sufferers.

Today the millions of sufferers around the world are urged to post a picture with the #MillionsMissing or if they are able, attend a protest to about the lack of government funding, medical and public education, that leaves patients with no relief

Today, seeing all these pictures and reading everyones stories, which I can relate to through my Daughter it has really affected me.  I posted my Daughters shoes with the hashtags #MillionsMissing #Missing School and #Missing Life.  She is now into her third week of being off school, a trip out at the weekend has knocked it out of her and all she did was sit in her wheelchair.  This is no life for a 12 year old and it breaks my heart to see her wiped out day after day and in pain daily and there is nothing I can do to help her.

So if I can help raise awareness and help fight for more to be done then I will.


Thank you for visiting x

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  1. 25/05/2016 / 3:55 pm

    What a great way of raising awareness, I had no idea this is what it meant x

    • admin
      25/05/2016 / 7:52 pm

      Thank you, it is not a lot but I have raised awareness a bit with my posts, but a lot of people think it is just the sufferer being lazy and just do not get the whole ME/CFS illness, and it gets tiring explaining all the time x

  2. 25/05/2016 / 4:26 pm

    Oh bless you both! It must be SO hard for you both 🙁 It would break my heart if my girls had it too. You are so strong x

    • admin
      25/05/2016 / 7:51 pm

      It is hard some times are worse than others, today I am really feeling it, I just want to wave a magic wand and make it go away. Thank you x

  3. 25/05/2016 / 10:34 pm

    This is an amazing way to raise awareness. People will be able to reach out to others facing the same things too!

    • admin
      26/05/2016 / 7:47 pm

      This was global, my news feed on facebook was full of pictures like this yesterday, it was hearbreaking x

    • admin
      26/05/2016 / 7:39 pm

      Thank you, my blog is about parenting and our lives, and this is unfortunately a daily part of our lives at the moment x

  4. 26/05/2016 / 5:19 pm

    I feel so awful for both you and Caitlin. You are definitely spreading awareness. I have read up a little about the disease after hearing about it on your blog. Is it true it COULD just do one overnight never to return? Sounds like they need to do a LOT more research.

    • admin
      26/05/2016 / 7:37 pm

      Thank you, I am having a bit of a rough time with it at the moment, my news feed was over run yesterday with the #millionsmissing pictures and it is heartbreaking. It could do one yes, will it return you don’t know. At the moment she is having a massive crash and is bed bound again, it could just go for a day, a few days, a week, even a year or two. No one knows. I am lucky to be in daily contact with someone who worked at her old school, who has a son into his third year with it, she is giving me so much help and advice and I do know now that the start is the worst, and a day of being on a high and going out can cause massive crashes, which she is experiencing.

    • admin
      27/05/2016 / 3:51 pm

      No they do not, and there are many Dr’s out there who do not believe this is an illness 🙁 x

  5. 27/05/2016 / 9:00 am

    Raising awareness is definitely the way to get more funds into research. I don’t know enough about this but have been reading up on the stories you’ve shared on the blog. Thanks for sharing x

    • admin
      27/05/2016 / 3:48 pm

      Thank you, I want to raise awareness, but also do not want to have it over run the blog and take the focus away from what I started it out as being. Although this is now a huge part of our life x

  6. 28/05/2016 / 10:51 am

    Your posts on ME are heartbreaking – I cannot imagine the pain of watching your daughter suffer like this. To show these shoes is a striking way of showing how she is missing out on life.

    • admin
      30/05/2016 / 8:10 pm

      It is a heartbreaking illness, the shoes pictures flooded my news feed and it really hit home just how many are affected and what they are missing out 🙁 x

  7. Harriet from Toby & Roo
    31/05/2016 / 6:39 pm

    So sorry your daughter is suffering through this, you’re right there isn’t enough research into this. H x

    • admin
      31/05/2016 / 7:41 pm

      Thank you, it is such a horrible illness x

  8. 01/06/2016 / 10:47 pm

    It’s a shame that no enough research has been done into this condition it sounds like they could help a lot of people by doing so.

    • admin
      02/06/2016 / 11:03 am

      It is a shame, and even now some professionals refuse to believe it is an illness x

  9. 14/06/2016 / 7:54 pm

    I saw and shared your message on FB. It’s a good picture and a terrific way of raising awareness. So many people have never even heard of this illness.

    • admin
      14/06/2016 / 9:42 pm

      Aww thank you, my news feed was filled, really got to me x

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