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.


Light Up The Night 2017


Over 55 people gathered on the Quayside at dusk on May 12th. We had amazing support for a fantastic event!

Lighting up the Night for the 25th Anniversary of World ME Awareness Day May 12, 2017

For  ME,  FMS,  MCS and Lyme


“Going” to my Light Up the Night Newcastle Upon Tyne & Gateshead! UK 2017 Event, on the 25th Anniversary of World ME Awareness Day, May 12, 2017.
So many thanks to my fabulous team of PAs and amazing friends for pulling this off!



Jo Hellens introduces the speaker: Pauline Donaldson, at the Light Up the Night Newcastle Upon Tyne & Gateshead! UK 2017 event. May 12, 2017.

Watch the video here!

Mrs Donaldson read a message from the initiator of the event – very severely affected bedbound campaigner, Anita Roddam, who has been living with me for 38 years.
(Photo Phil Benton)


2 Parliamentary Candidates (PCs) Ian Mearnes and Liz Twist, holding the MAIMES “Adopt an MP” Pledge forms. 2 non-attending PCs have also pledged their support, should they be successful in the general election. At Light Up the Night Newcastle Upon Tyne & Gateshead! UK 2017. On May 12, 2017, the 25th Anniversary of World M.E Awareness Day. (Photo: Phil Benton)


Speaker, Pauline Donaldson and Parliamentary Candidates: Ian Mearnes and Liz Twist holding the MAIMES “Adopt an MP” Pledge forms at the Millennium Bridge, Gateshead/Newcastle upon Tyne. 2 more non-attending PCs have pledged their support for our campaign, should they be successful in the general election.
(Photo: Phil Benton)


Our young campaigners, Laura and Emily, handed out leaflets at the Light Up the Night Newcastle Upon Tyne & Gateshead! UK 2017 event, May 12th. They did a great job! Looking forward to seeing you both next year!



18447426_432474603782571_5878820352438508365_n“TOO ILL TO BE HERE!” – three very severely affected PWME are represented at the Light Up the Night Newcastle Upon Tyne & Gateshead! UK 2017 event. Millions ARE Missing

The Gateshead Millennium Bridge lit in purple for Fibromyalgia Awareness and green for Multiple Chemical Sensitivity and Lyme Awareness. May 12, 2017


The Tyne Bridge, Newcastle upon Tyne, lit in Blue for Awareness of Myalgic Encephalomyelitis, on the 25th Anniversary of World ME Awareness Day




The Many Faces of ME: International Activist for Myalgic Encephalomyelitis

First published on Facebook by MILLIONSMISSING CANADA·TUESDAY, 25 APRIL 2017

May ME Awareness Day 2017: Twenty-Fifth Anniversary

Lighting it Up Blue in the North East of England 

She’s done it again! Our friend Anita in the UK has single handedly put ME on the map, fairly and squarely, once more!

As far as we’re aware, for the first time EVER, the famous arched Tyne Bridge spanning the River Tyne and linking Newcastle Upon Tyne with Gateshead, will be lit up for ME in blue for ‘Light Up the Night’.

From dusk Friday evening May 12th until dawn Saturday morning, the bridge will be lit up in honour of all those suffering with Myalgic Encephalomyelitis.
This year will mark the 25th Anniversary of World ME Awareness Day and what a special way to commemorate this landmark event.

To start the process, Anita initially contacted her city council. After communicating with them and receiving the much sought after confirmation, she turned her attention a little further down the river to the next bridge – one solely designed for pedestrians and cyclists.

A separate local authority needed to be contacted about lighting this particular bridge. Encouraged by Newcastle’s positive response to the request, it wasn’t long before Anita had secured a commitment for this second bridge to be lit as well.

Noteworthy here is that both councils that were approached were very positive in their exchanges. We want to join with Anita in expressing how extremely grateful we are to them for their willingness to accommodate the requests and their very kind and considerate support of ME.

Newcastle Upon Tyne is renowned for its’ engineering history. The Millennium Bridge, also referred to as the ‘Winking Eye’ or ‘Blinking Eye’ Bridge, is a unique structure built in 2001. It is the first and only tilting bridge in the world. Its grace and engineering attract people from all over the globe.

For those of us who have no idea what a tilting bridge is, there’s a link below to a short time-lapsed video clip showing this one-of-a-kind structure in operation. You’ll soon discover why its nickname is so well suited. Very unique! Take a peek!

The Millennium Bridge, built in 2001, is the only one of its kind in the world!

This unique tilting bridge crossing the River Tyne connects pedestrian foot and cyclist traffic between Gateshead and Newcastle Upon Tyne.

You would think at this point with the goal achieved, we should all be sending Anita our warm wishes and congratulations on her most notable achievement.

However, arranging the lighting of the bridges is not the end of the story but is, in fact, only the beginning!

There have been many, many new developments since this began just a few short days ago. Anita has garnered overwhelming support for her efforts. People have been contacting her left, right and centre wanting to be involved.

A lovely gesture from a supportive family was the start of it all. This family, wearing red Millions Missing T-shirts and accompanied by the beloved family dog sporting a red neckerchief, offered to go down to the bridge to pass out leaflets, blue ribbons and collect signatures for the new UK Parliamentary Petition (see note below). It is now quickly blossoming into quite the event.

Even as I pen this article, this affair is continuing to grow quite rapidly and a Facebook Event Page has now been set up for it. Anyone who would like to join in is being asked to please just jump right in. Announce yourself over there and connect up with others who will be attending.

Anita writes: “For all of our friends who are not able to attend in person, either due to their conditions or the distance of their location preventing them from doing so, there is the option to give your much appreciated support by indicating “Interested” on the Event page.”

The local Tyne and Wear ME/CFS Support Group has announced the news asking for participation from their members, and the regional ME charity of ME North East has recently placed an announcement on their Facebook page asking for volunteers to come out.

Thank you so much to both of these organizations for your enthusiasm in encouraging others to come out and support the effort.

Anita – you amaze and astound us! Your determination, ingenuity and tenacity are an example for us all. We have such admiration for you!

In our great big family of ‘Millions Missing’, Anita is one of our treasures. She has grown near and dear to us here in Canada. We’d dearly love for her to be able to see the fruits of her labours in May – and we in Canada would surely love to see the results as well!

You see, Anita will be unable to attend this wonderful gathering herself, as she has been totally bedridden with Myalgic Encephalomyelitis for the last twenty-four years.

She is barely able to move, using her voice, when able, to create emails and post messages, which makes this feat that she’s orchestrated from her bed all that more remarkable and monumental!

So, we’re making an extraordinary request for an extraordinary woman!
We’re asking if the residents living close to that area in the UK would consider going down to the bridges on that Friday night, May 12th.

Would you be so kind as to take pictures of the bridges lit up and the action that is bound to be happening down there and graciously send to them to us. Your thoughtfulness would be valued more than you could know.

We’ll make sure Anita has copies of every single precious photo and we’ll be quite thrilled to share them with our Canadian viewers here at home by posting them to our Facebook page.

Thank you Anita for sharing your many amazing talents for the benefit of the entire global ME community. You’ve brought so many successes to the community over the course of many, many years.

“Congratulations on another success, dear friend!”

If you are reading this from the UK, please click on the link to the UK Parliamentary Petition below. Because of the election being called, the end date on the petition has been moved up. There are only a few days left and more than 1700 signatures are still needed.

Please sign and share with your families, friends and caregivers so they can add their name and show their support as well.

Thanks also to all those who can come alongside Anita to offer their help and assistance in planning and organizing the finer details of this occasion. It has grown significantly and any assistance you can offer to Anita to ease the load would be so appreciated.

To those wonderful souls who come out to support and participate in this movement, we want to express how touched we are by your generosity of spirit.

Finally, but certainly not last, so-o-o-o much thanks goes to those dear ones who will so kindly honour our request by sending in your photos.
Over very Best Wishes for a successful event.
Much love from Canada ♥

Date: Friday, May 12th, 2017 Time: 8:30 pm onwards Place: Millennium Bridge (Newcastle side)

Details: Volunteers will be passing out leaflets and blue ribbons.

Bridge Lighting: The iconic River Tyne Bridge, Newcastle upon Tyne, and the Millennium Bridge, Gateshead will be lit up from 7pm, and dusk, respectively. The Tyne Bridge will be lit in blue for Myalgic Encephalomyelitis and the Milllennium Bridge will be purple for Fibromyalgia and green for MCS/Lyme.


Event Page for ‘Light Up the Night’ Newcastle Upon Tyne UK

Millennium Bridge In Operation (Time-Lapse)

Please Note:

Because of the election being called, this UK Parliamentary Petition needs signed before May 3rd. If you are a UK resident, kindly sign and ask family and friends to sign before that date. Thank you.


Anita Roddam Light Up the Night Newcastle upon Tyne UK ME North East Tyne and Wear ME/CFS Support Group 25% Severe ME Group News Page Barbara Fifield