Wednesday, 25 May 2016

#MillionsMissing & Northern Ireland

Today is 25th May and the day of the global #MillionsMissing campaign, where empty shoes are being used to represent active lives lost to ME.

These are my shoes, but they don't get the wear they deserve.  

Since March 2012 I have been unable to work, and incapable of walking normal distances.  The soles of these shoes remain without the scuffs from the paths that I might have trod since the day that I got ME. 

Of course I found other paths in life - not ones to "walk", but rather ones I've been pursuing in a more sedate manner.  This blog is one such new path.  

My activity with the charity Hope 4 ME & Fibro Northern Ireland is another.

In fact Hope 4 ME & Fibro NI are supporting #MillionsMissing campaign with an empty shoe demonstration at our up and coming conference - "Chasing Competent Care" on Monday 6th June. You may recognise the shoes in this flyer for the event!

We hope to get  a big attendance from patients, carers, medical professionals and other interested individuals.  There has been a lot of interest to date. (Click on the images below for more detail)

Care for the estimated 7,000 ME patients and some 22,000 fibromyalgia patients in Northern Ireland is almost non-existent and, where it is provided it is largely inadequate.

To quote Joan McParland:

"If you're a patient in NI and completely satisfied with your quality of life and having no hope for a better future, then just ignore and eat more cupcakes!
: the lack of a dedicated NHS Consultant
: the lack of supporting specialist NHS services
: the lack of education within the medical community
: the lack of awareness within the general public
: the fact it's almost impossible to get an accurate diagnosis
: the fact you will most likely be sent to mental health clinics
: the fact you will be advised to exercise and little else.
: the fact HSCB have done nothing since 2009 other than
agree the situation is 'frustrating.'
: the fact HSCB are insisting future NHS services will offer 
only Condition Management Programmes claiming 'many'
patients will return to work after 12 'talking treatments!'
: the fact HSCB medical advisers have reversed the decision 
to give financial support for our medical professionals 
education training events unless we solely promote NICE 
Guidelines (includes GET/CBT and little else)
: the fact parents are being put under investigation if their
child does actually get a diagnosis of ME.
: the fact, many medical professionals are interested enough 
to actually request educational material from our patient 
: the fact none of the above will change by talking, moaning, 
groaning sessions, being frustrated, being angry or just
accepting the intolerable situation. 
And more....
OR if at all able, join us in the Stormont Hotel on 6th June
OR send a family member or friend.
OR request your name be added to a pair of empty shoes here.......
OR post, deliver your empty shoes to any 'Hope' trustee, addresses available on request by PM."

Our event is advertised on here:

Also you can keep up to date with Hope 4 ME & Fibro NI activities on our announcements page here:

Please also check out the #MillionsMissing tag on Twitter. 

Thank you for your interest. 


  1. My shoes went to Washington; I have yet to see a photo, but I'm sure there will be one of the whole thing (I don't expect to see MY shoes, but you never know - and I forgot to photograph them before I mailed them.

    Brain fog, you know.

    Hope your protest is successful.

    1. Here's a couple of links Alicia of pictures with shoes in Washington. I know 2 pairs of shoes there. Now I know 3! Nice to meet you.

    2. Exciting to be part of all this. A picture of me went to one of the demos - it had been used last year and they asked to use it again. Barbara - thanks for those links. :)

  2. Brilliant blog and work by your charity, and the upcoming event looks impressive too. Very well done all round, hats off to you!

    1. Thank you Jo. So much going on now. Change must come soon surely. :)

  3. Interesting for you to join in on pretty much everything. A graphic involving us attended one of several demonstrations - it was applied recently and they also inquired to work with the idea yet again.