#MEAction, a global network of People With ME (PWME) was co-founded by Jennifer Brea.  Then came the #MillionsMissing campaign.  PWME around the world displayed pairs of shoes in many cities, representing the 25% of PWME who are housebound and bedbound, and – until now, unable to protest.  Many severly ill PWME took photos of their shoes and posted them as profile photos on social media for the campaign.  

(Photo Millions Missing Campaign May 25, 2016):

May 25, 2016:  


This is a picture of two of my pairs of shoes: firstly from when I did ballet soon before I became ill as a child with severe ME and Fibromyalgia Syndrome. The second pair are shoes I wear today while I am still profoundly ill. My childhood shoes are also a reminder of the children I may never be well enough to have and bring up myself.

20 years ago we felt frustrated ME/CFS had no recognition because people with it were too sick to campaign, or take action. Now, research is starting and with the internet, people with ME can have support, campaign and be heard. This is empowering! For more information and ways you too can be involved (you don’t have to have ME!), please see www.meaction.net #MEAction #MILLIONSMISSING as we protest, today, 25/5/16.



Sept 27 2016 was the second international day of action by #MEAction promoting awareness and change for the #MillionsMissing (around 20 million people worldwide) with ME, Myalgic Encephalomyelitis.

The below ‘Spot The Difference’ cartoon is my contribution to spreading insight into the disabling condition that I have had for over two and a half decades.

It can be found on my blog here: http://byshi.hogfish.net/2016/09/26/life-with-me-spot-the-difference-weekend-girly-coffee-date/

Prints and Posters can be bought here: http://www.redbubble.com/people/shilissimo/works/23287235-life-with-me-spot-the-difference-weekend-girly-coffee-date-part-a-image?asc=u&c=586808-chronic-illness-awareness and


More about the #MILLIONSMISSING campaign can be found here: http://www.meaction.net/

© 2016 by Shiloh Moore


“You look great! But you don’t look sick.
I feel tired all the time too,
maybe I have chronic fatigue? Hahaha!”

30 something married mother
+ career woman:

1) Frazzled long hair from morning gym session
2) Pretty dress + make-up
3) Heavy jewellery
4) Favourite perfume
5) Large slice of cake
6) High heels
7) Feet sore from standing and walking all morning
8) Shopping bags from browsing before coffee date
9) Barely able to sit still
10) Car keys for driving
11) Coffee date is the 5th of 10 events today

= Is healthy but overworked


(Smiles awkwardly)

30 something single woman with no kids
+ no job:

1) Bed-hair, cut short because it causes pain
2) Comfortable clothes + no make-up – no energy for fuss
3) No accessories as they trigger pain
4) No scents or chemicals as she is sensitive and reacts
5) No cake due to food intolerances
6) Flat shoes with orthotics
7) Feet sore from standing at all
8) Just got up at 10.30 in time for coffee
9) Barely able to sit up long enough for a brief cuppa
10) Driven door to door by a carer
11) Coffee date is the only non- medical outing or visit from a friend all week.
She will need to go home to rest immediately after.

= Has moderate ME (Myalgic Encephalomyelitis) and FM (Fibromyalgia Syndrome)