Black Dress Day 2018



Black Dress Day May 31st 2018
This is my black chiffon cocktail dress and pearls.

Last worn for a Valentine’s Day party in 1985,
when I was 28 years old.

They are lying on the empty side of my bed.
The side on which my beloved would lie, when I was well.

The lover who gave me the Valentine’s card which they’d hand made for me.

The lover who wanted to be with a partner who could share
travel, holidays and the sights of the world with them.



My Countrywide Millions Missing Action, May 2018

Yes, I am one of the #MillionsMissing but my wonderful friends, all over the country, enabled me to be ‘present’ and to represent some of those Millions Missing.
So yes, you can see us now.


Getting a hug, as promised, from Ali Head at #SouthamptonMillionsMissing — with Ali Head.


With Cllr John Lethbridge Mayor elect for Durham County, Jo Hellens and Jennifer Elliott CEO of ME North East at the #MillionsMissing Visibility Action Durham City Marketplace May 12th 2018 — with Jennifer ElliottRobert Rickerby and Joanne Hellens.


Finally getting to meet Abbie Grant at #SouthamptonMillionsMissing May 12th 2018 — with Abbie Grant.


I’m about to turn round and look at the empty shoes of *400 Missing* people living with ME at #SouthamptonMillionsMissing , May 12th 2018


This picture amazed and delighted me. My friend of 30 years, who I can never see due to my being bed-confined and unable to receive visitors, is not even a member of the ME awareness-raising movement. But, created this silhouette to represent me, just in case we marched on the castle with flaming torches! At the #DurhamMillionsMissing Visibility Action May 12th 2018.


Here I am at #DurhamMillionsMissing. May 12th 2018 There’s a certain irony about this photograph. My posterboard is in my wheelchair, but in reality I, myself, have been too ill to physically sit in a wheelchair and maintain an upright position since 1993.


This is Isla. She is my/ our youngest supporter so far. Isla is 5 years old and she and her mother Kirsty shared my story at the #ManchesterMillionsMissing UK, May 12th 2018.

Isla looked at my photo and was very worried about me.
If only Jeremy Hunt, UK Minister for Health & Care would show the same humanity.

Let’s encourage new generations and acknowledge their compassion. — with Kirsty Edgson.


With Claire Tripp at Radio Solent raising awareness of ME and very severe ME during ME Awareness Week May 2018.
Credit: Tom Mitchell’s fantastic advocacy seen on his posterboard bottom right. You can read all the words!
 — with Tom Mitchell.


Another very special friend who also travelled to Durham and who still supports me *after 25 years* with practicalities and with the hellish, relentless bureaucracy that is life with ME, in the UK 2018. — with Dawn Young.


Cllr John Lethbridge Mayor elect for Durham County, Jennifer Elliott CEO of ME North East, Anita Roddam ‘in’ the wheelchair, Zoë Williams (pictured) in the horizontal wheelchair, Tom Mitchell (also pictured) Dawn, Jo Hellens (kneeling), Janette C. and Janet Robson, Mum of Amy, at the #DurhamMillionsMissing Visibility Action Durham City Marketplace May 12th 2018.
Photo credit: Amy Harbottle


And then I got to ‘go’ with Abbie Grant to ‘see’ the Spinnaker Tower, Portsmouth at dusk, just lighting up blue for ME Awareness.


#CanYouSeeMeNow #Youcanseeusnow #DurhamMillionsMissing#SunderlandMillionsMissing #SouthamptonMillionsMissing#ManchesterMillionsMissing #EdinburghMillionsMissing#BristolMillionsMissing

What The UK Minister For Health & CARE Needs To Know


What else does the UK Minister for Health & CARE not know about Myalgic Encephalomyelitis?

That for 250,000 UK ME patients there is: 
NO Appropriate Guidelines/ Policy
NO Teaching NO Knowledge
NO Doctor NO Consultant
NO Research NO Treatment
(ME is not taught in Medical Schools or Training Colleges)


1). Allocate funding commensurate with disease burden for Biomedical Research into ME
2). Dangerous practices of GET and CBT to be removed immediately from NICE guidelines
3). ME to be taught in Medical Schools and training colleges including Acute & Community care
4). Appointment of trained ME specialists/consultants
5). All General Practitioners and Consultants to be informed
6). Treatment

Visibility Action 2018



19 posterboards and a banner heading to Sunderland tonight ready for the Tyne & Wear ME Support Group’s Gathering and Photo-call at the foot of Penshaw Monument 1.30pm -2.30pm on Saturday May 12th 2018.


And, from dusk onwards (9pm), the monument will be lit up in blue to acknowledge M.E. Another photo opportunity for those who are still up and are able to be there.

Have a great Visibility Action!

with Joanne Hellens.