Wednesday, 25 May 2016

Millions Missing

Hello.......... Just thought I'd pop in quickly to raise a bit of awareness, I'm joining in the #MillionsMissing virtual protest today, by popping my shoes outside the door.  It's a global day of protest to raise awareness about M.E which urgently needs to be taken seriously when it's come to funding and research.

I read this the other day and it's just astounding,

"Did you know that in the USA male pattern baldness receives six times the funding that ME research does? And that the amount of money that goes into MS research each year equals 23 years of ME funding? 

There are many exciting developments happening in ME research but we need more money and time given to developing a cure. Almost all of the money on ME research is raised by patients themselves. This just isn't right."


As you know I'm not doing too well at the moment, in fact last night my balance just went when I was downstairs, world spinning, I fell in the hall because of this and after that I the only way I could make it to bed was to slowly crawl up the stairs on my hands and knees, I'm still not right this morning still dizzy and feeling very sick, this is just one symptom of a huge list of symtoms I have to deal with each day.

Luckily I made this sign the other day, to raise awareness of todays protest on my Instagram, like many ME patients there is no way I'll be able to make it to the protest in London today, I'm in bed and protesting from there the only way I can.

So that's why I'm joining the ‪#‎millionsmissing‬ virtual protest today, please join in too we urgently need to fund research and awareness, for this debilitating illness. Pop your shoe outside and take a pic and share it on your social media, for the many ME patient who just won't be able to take part,

Today I'm ..........

I'm missing work,
 I'm missing dancing
 I'm missing travel
I've been missing since 1989
  Missing my life since I was14 years old, (just imagine what that's like, think about that happening to you're child)
 I'm Missing being a parent,
I'm Missing having a life
I'm Missing being about to walk more than a few metre
Missing just being about to go out to do the grocery shop
Missing the Sunshine.
Missing being the person I should have been!!

Just to mention a few of the things I've miss out on in the last 27 years

Thanks for reading, it took a lot of today precious energy for me to write this.

Clare xx 

Here's  a link to the protest website if you want to read a bit more 


  1. Hi dear Clare. Thank you so much for putting this out there.I will take a photo when I get home this afternoon. It is outrageous that more money is spend on male-pattern baldness! You may remember that my teen-age niece has POTS, so I am all too aware of how devastating this illness is.
    I read your post with such sadness and sympathy. My heart breaks to think of you falling and crawling. You are right. We need to find a treatment or cure!!

  2. Hello Claire. I'm sorry to hear how badly you're feeling right now. And you're right. It's a travesty to think that more money is spent a male pattern baldness. I wish you well my friend. Blessings, Betsy

  3. A travesty indeed, I sincerely hope the protests help to raise some much needed funding. Hope you feel a little better soon.

  4. Thanks for your protest, Clare. I am sorry that you and others are suffering with this illness, and I appreciate your efforts to raise awareness and promote more research to heal those in need or healing. xxxxxxx

  5. I applaud your protest my friend. Males anything gets much more research than it should, don't even look up erectile dysfunction, that amount will make you ill.