Saturday 2 August 2014

Black Dress Selfies for Severe ME

The little black dress has long been regarded as a wardrobe staple for young ladies.

This year Janet Smart came up with the amazing idea of encouraging us all to wear black dresses to raise awareness for those suffering in darkened rooms with Severe ME.

The campaign started on FaceBook (where else) and an amazing Black Dress image was soon produced by Wendy Boulitier.

Janet started to contact retail outlets and a very positive response was generated over the idea of promoting Black Dress sales for August 8th.

The idea then started to take off, and so the BLACK DRESS SELFIE campaign developed.

The artwork was quickly expanded to become an info-graphic, and the concept started to gain momentum.  

Click on image to magnify.
The poster explains:

8th August is Sophia Mirza’s birth date
Sophia died from severe Myalgic Encephalomyelitis at the age of 32
This year would have been Sophia’s 41st birthday.

Please promote Black Dress Day by posting your selfie on social 
media along with this image. More information at:

Perhaps you could help spread the Black Dress Selfie meme by nominating 3 friends to do one too?

SEVERE ME is widely misunderstood.

Many individuals with "mild" or "moderate" ME are able to appear almost "well" for short spells.  This gives the general public the notion that ME is not at all serious!

However for 25% of ME sufferers this disease is "severe" and the dream of any normality is cruelly snatched away.  Yet the suffering of these individuals goes largely un-noticed and un-recognised.

No one seems to believe that illness of this intensity can really last so long.

Please help promote this awareness campaign, by sharing this blog post,  the poster image above and/or by having a bit of fun with publishing your Black Dress Selfies!

And if any of you wish to share your photos here as well as with your friends, please send your selfies to  or contact me via FB or Twitter.  Black dress images at the link below:

Thank you!


After Notes:
Severe ME Awareness Day - 8th August was launched by the 25% ME Support Group. 25% ME Support Group website
 25% ME Support Group - Severe ME Day 2014

To find out more about Sophia Mirza and the tragedy of her death,
see the Invest in ME website:

The Story of Sophia and M.E. 
and watch this video: 

The Death of Sophia Mirza

More information about Severe ME can also be found on the Stonebird website:
Stonebird: The Lived Experience of Severe ME

And I have also written about Severe ME in a previous blog post: 
Living Death Disease??

*Correction now made to poster: This year would have been Sophia's 41st Birthday not her 40th as was first said - apologies.  


  1. This is great Sally. Looking forward to seeing selfies.

    1. Should be fun! A couple in already, and taking pics of my daughters etc. tonight. :-)

  2. Just realised I did pack one so I will be joining in. Will share this link on my blog too. Interested to know what retailers supported this.

    1. Hi Sian, I missed this reply in all the buzz on the day. I think in the end retailers that Janet contacted just made nice noises, but that nothing further happened. To be honest the idea was hatched only a few hours before I wrote the blog post, so all very close to the day.

  3. Replies
    1. Brilliant and I love the blog post that goes with it. I'm going to link to that beneath your photo. (Which will be in the 2nd post with images.) Thank you!

  4. I'm afraid I don't have a black dress after 18 years of severe ME and if I did it would take such a huge amount of precious energy to put it on and then change back again and I don't think people seeing this campaign would get that. This really leaves most of us with severe ME out and all of those with very severe ME. It also implies men don't get ME. I hate so much being negative especially since putting together a campaign is so important and appreciated but I'm afraid this one does miss the mark. I would love it if you'd take some of this into consideration and come up with something amazing for next year. -Jan

    1. The Black Dress Selfie, was something that arose rather spontaneously and traveled much further than expected!!

      To be honest I wasn't expecting many - or indeed any - severe patients to dress up black themselves, but I thought that this might catch the imagination of the "well", and in this way help spread awareness beyond ME circles.

      The fact my daughters' friends all jumped on the idea and used it as an excuse to dress up made me think that this was worth a try.

      Certainly, I am open to improved suggestions for another year. Maybe to keep the theme alive we could call it the "Dress Black" campaign next time, and then the lads wouldn't need to try drag?

      Thank you for your thoughts on the matter, and I'm totally open to further suggestions.

    2. I know you had the best of intentions, Sally and I do appreciate so much your putting together a campaign. I felt conflicted about saying anything negative but I also feel that it's so very important not to leave out the sickest people and groups like men and children who get ME too.

      Maybe more of us should put our heads together sooner next year and come up with a more inclusive idea? Thanks for your considerate reply. I found you through reading Jocelyn's blog. I don't ever comment much due to limited energy but will remember to check around these blogs next June or so when people may start planning. -Jan

    3. Jan - please check out the photo galleries, this was probably much more inclusive than you imagine. ;-)

    4. Thanks for directing me to them, Sally. The pics of Christine and Joan on pg 2 are more of what, for me, Severe ME awareness is. Kudos to the guys who got involved! Seeing the pics I have a better idea of what you were going for, but just seeing the campaign poster with its glamorous image and the idea of posing in a "little black dress" made me feel this wasn't for me since this is beyond my capabilities. Not only the dress part but I don't have a cell phone or camera to take a selfie, nor do I use social media. I'm glad to see others had more imagination and found ways to participate anyway. :) -Jan

    5. n my view awareness campaigns do not always have to actively involve the individuals for whom awareness is being raised. Take for example my husband cycling the length of Ireland for ME.

      Sadly, I don't believe any campaign will please everybody. I wish you had been able to participate too. xx

    6. You're right and I hadn't thought about it that way. But it's good to bring in more people and show how family and friends are affected too. So the more dressy type selfies can be done by people supporting those with ME - I do like that idea. I'd love to see everyone with signs saying "Friend/sister/spouse/etc. of person with servere ME" or for the people who are ill it could be "Severe ME bedridden 12 years". Just something I'm throwing out there. Thanks so much Sally for taking the time to keep explaining to me. -Jan

  5. I'm a man and have pretty severe ME. But I'm able to kind of walk through my house again. And on a good day I can sometimes do a little more. But pretty much house bound and sofa/bed bound.
    I think I will be able to squeeze a selfie in but I obviously don't have a black dress but was thinking of just using some black material to make it look like a dress.

    Nice campaign.

    1. Thank you Anil, there were some amusing photos taken during this campaign and the gentlemen got totally into the mood also. This was done to raise awareness around Severe ME day on 8th August last year.

      I think the campaign is running again this year, but there has been some chat of using it around 12th May for ME Awareness Day. So plenty of time to get your "dress" ready. ;)

      Thank you for your interest. And hope you are keeping as well as possible. xx

  6. Hi Sally,

    Would love to see them?

    1. Near the end of the write up above there is a heading "Black Dress Selfie Parade" - it's a link to the first of 3 pages of images. I think most of the lads' photos ended up on the second page. We had a LOAD of fun with this last year!

  7. Very nice. Who knows it might become global at some point.

  8. Sorry we missed this Sally. My daughters would have happily put on their little black dresses to support awareness of severe M.E.