#MillionsMissing – how to become a lot more visible on the 27th of this month | updated 19 September 2016

The second shot in this year’s #MillionsMissing protest campaign to get ME/CFS pushed further up the political agenda will be fired in six cities round the UK on September 27. And some of the local organisers have put out calls for more shoes to lay on the ground if you can’t get along in person.

Organisers of the UK arm of what is described as a another global day of protest aim to build on the success of the first #MillionsMissing protest which was held in May.

SIGN UP TO THE SEPTEMBER 27 THUNDERCLAP HERE: www.thunderclap.it/projects/46042-millionsmissing-demand-change?locale=en#

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IN LONDON, protesters and their empty shoes will gather again outside the Department of Health in Whitehall between 12noon and 2pm


The London protest Facebook page says:

Following the overwhelming success of #MillionsMissing just a few short months ago in May, the ME community is rearing to let their voices be heard once again!

There are millions of people across the world today living with the complex neurological disease, Myalgic Encephalomyelitis who are actively and indefinitely missing from their childhood, their adolescence and their adulthood; their education, their careers, their social lives and their ability to contribute to society.

Despite scientific progression in many illnesses and diseases, ME remains a stagnant orphan condition, continually missing millions of pounds in funding for research and treatment, and missing millions of doctors, researchers and specialists to assist sufferers in their every day lives. At a time where more and more lives are being lost to this disease, both young and old, this complacency must and will change.

So join us, patients, families, friends, supporters, allies, and our next generation of hope, in London this 27th September for a Round 2 where we continue, unrelentingly, to fight for health equality for all.

You may also RSVP for this event at:
my.meaction.net/events/millionsmissing-london-demonstration

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IN OXFORD, the demo will be held outside the Radcliffe Camera, Radcliffe Square, from 12noon to 1.30pm


The Oxford demo website says:

Following the overwhelming success of #MillionsMissing just a few short months ago in May, the ME community is raring to let their voices be heard once again!

Please join us in our fight for health quality, however if you cannot attend, please send your shoes in your place!

Please send here:
Manor Farm,
Albury View,
Thame,
Oxford,
OX9 2LQ.

If possible please include your first name, how long you have been ill and what you most miss from your life ie careers, relationships, family etc.

There are millions of people across the world today living with the complex neurological disease, Myalgic Encephalomyelitis who are actively and indefinitely missing from their childhood, their adolescence and their adulthood; their education, their careers, their social lives and their ability to contribute to society.

Despite scientific progression in many illnesses and diseases, ME remains a stagnant orphan condition, continually missing millions of pounds in funding for research and treatment, and missing millions of doctors, researchers and specialists to assist sufferers in their every day lives. At a time where more and more lives are being lost to this disease, both young and old, this complacency must and will change.

So join us, patients, families, friends, supporters, allies, and our next generation of hope, in Oxford this 27th September for a Round 2 where we continue, unrelentingly, to fight for health equality for all.

You may also RSVP for this event and follow updates at: www.facebook.com/events/782408355191991/

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IN BRISTOL, there will be an all day demo in front of the Council House on College Green. The key time to attend if you can get there in person is between 12 noon and 2pm person but the shoes will be on show all the time between 9am and 6pm.


Heres what the Bristol Facebook page says:

After the success of the #MillionsMissing Protests in May, round 2 is scheduled for 27th September, and it’s happening here in Bristol. Come and be part of this global day of protest, whether virtually or physically, and campaign for change that’s so desperately needed.

250,000 people in the UK alone are missing out on life due to ME. A quarter of these patients are so severely ill they are unable to leave their homes or beds. What’s more, doctors are missing out on training on this disease, and research funding is almost non-existent: in 2016 the NIH allocated $6 million towards studying ME/CFS. They allocated six times this amount to study Male Pattern Baldness.(1)

Please come and be part of this exciting change and campaign for health equality for all. Further information can be found here: http://www.meaction.net/

Symptoms of ME – which include neuro-immune malaise following activity, neuropathic pain, over-sensitivisation to external stimunli (light, noise, touch, etc), fainting, sore throat, memory and concentration problems – will make a physical protest impossible for a majority of patients. We ask ME sufferers to instead send a pair of shoes to represent them, which will be displayed at the demonstration. Please get in contact with me (Katharine Cheston), either on here or at katharine.cheston@gmail.com, and I will give you my postal address. If this is an issue please get in touch and I will endevour to make other arrangements for you. Other things you can do to get involved (health depending) include: posting on social media using the #MillionsMissing to raise awareness, and encouraging friends and family members to come to the demonstration on your behalf (they could even bring a photo of you with them).

(1) www.healthrising.org/blog/2016/05/04/chronic-lack-funds-chronic-fatigue-syndrome-mecfs-research/

News coverage of the #MillionsMissing demonstrations in May: millionsmissing.meaction.net/press/news-coverage/
www.standard.co.uk/news/london/millionsmissing-sea-of-empty-shoes-left-outside-department-of-health-in-global-me-protest-a3256756.html

You may also RSVP for this event at: my.meaction.net/events/millionsmissing-bristol-demonstration

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In NOTTINGHAM, the demo will take place at Speaker’s Corner near the Brian Clough statue between 12noon and 4pm.


And here’s what they say about themselves on their Facebook page:

Following the overwhelming success of #MillionsMissing in May, the ME community is getting ready to let their voices be heard once again and this time Nottingham is getting involved.

There are millions of people across the world today living with the complex neuro-immune disease, Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) who are actively and indefinitely missing from their childhood, adolescence & adulthood; their education, careers & social lives.

Despite scientific progression in many illnesses and diseases, the cause of ME remains unknown therefore there is no treatment available only limited symptom management options.

Continually missing millions of pounds in funding for research, missing millions of doctors, researchers and specialists to assist sufferers in their everyday lives. At a time where more and more lives are being lost to this disease, both young and old and patients all to often still met with disbelief, symptoms dismissed or advised to follow protocol that is detrimental to their health this complacency must and will change.

So join us, patients, families, friends, supporters, allies, and our next generation of hope, in Nottingham this 27th September for a Round 2 where we continue, unrelentingly, to fight for health equality for all.

For those unable to attend in person virtual protest options are available namely sending shoes to represent the person missing be it yourself, your friend/family/colleague/neighbour. The MS Therapy Centre has kindly agreed for the shoes to be sent there.
If dropping off in person the opening times are:
Monday 10.30 – 6.00
Tuesday 8.30 – 2.00
Thursday 10.30 – 6.00
Address:
Nottingham MS Therapy Centre
Unit H2, Trent Park Industrial Estate
Little Tennis Street South
Nottingham
NG2 4EU
Please include a tag with the shoes advising
Name of person with ME
Their location
Year fell ill
What aspects of life missing from
Feel free to add any additional information you feel relevant for example hopes for the future of ME research, treatment, perception.

If you want to get involved by making banners/placards to be displayed on the day these would also be much appreciated.
Please contact Hannah or Jenny for further information on how you can get involved.
Nottingham Speakers’ Corner is located off Market Square towards King/Queen St near the Brian Clough Statue

RSVP on the #MEAtion website: my.meaction.net/events/millionsmissing-nottingham-uk

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IN CARDIFF, gather on the steps of the National Assembly building between 12noon and 2pm.


Here’s the Cardiff campaign message on Facebook:

After the success of the #MillionsMissing Protests in May, round 2 is scheduled for 27th September, and it’s happening here in Cardiff. Come and be part of this global day of protest, whether virtually or physically, and campaign for change that’s so desperately needed.

The demonstration will be on the steps in front of the Welsh Assembly. We plan to have music and dancing as it is an area where many pass by, stop to watch and ask questions.

Contact MESiG (MESupport in Glamorgan) with any questions: mmesigwales@gmail.com

You may also RSVP for this event at: my.meaction.net/events/millionsmissing-cardiff-uk-protest

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IN BELFAST,the demo will be held outside Stormont between 3 and 5pm


Here what the Belfast Facebook page says about the event:

Hope 4 ME & Fibro Northern Ireland wish to thank Jo-Anne Dobson MLA for hosting this event.

We have approx 200 pairs of shoes from the June demo so no need to send anymore but do feel free to bring a pair if attending.

Labels for shoes will be available for you to add your special message.

Patients can also bring posters or send a photograph, we will display on your behalf.

The empty shoe display will take place in the ‘Apron area’ at the bottom of the steps directly in front of Stormont Building.
This is the headquarters of our government and ALL 108 Members of the Legislative Assembly (MLA) will receive an invitation to join us at some stage during the two hour demonstration.

It will help if patients also contact their MLAs asap to encourage attendance to sign up and pledge their support on the day. Free packs containing information about the disease plus the total lack of specialist NHS services and dire situation for NI patients, will be available for all MLAs.

Special invitations will be posted and emailed to the Minister for Health and all members of the Health Committee.

A covered area with room for wheelchairs will be available should the weather be unkind! It would be helpful to bring a folding chair or roll up mat and flask of hot tea if intending to stay for an hour, or two, depending on health of course.

Car parking is available inside the grounds but may be a few hundred yards from the display area. Alternatively, patients could be dropped off at the Apron and more able-bodied drivers proceed to the car parking area.

Permission to demonstrate at this prestigious venue may only be available on this one occasion so please help us to get YOUR message out loud and clear!
Our time IS coming, as we join in this global protest by ME patients in cities and towns around the world.

You may also RSVP here: my.meaction.net/events/millions-missing-belfast-northern-ireland