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#MillionsMissing with a red string underneath in a white box over an image of books on shelves. With #MEAction logo and the words #MILLIONSMISSING London- NEW DATE 18th Oct 2022 Parliament Square @ 1-3pm in a red box below.

October 18, 2022 @ 1:00 pm 3:00 pm BST

#MEAction UK is​​ excited to announce a new date for #MillionsMissing London 2022.  

Join us at Parliament Square on 18th October  from 1-3pm to demand the millions of pounds missing from ME research in the UK! Mark your calendars now!

While we are asking for those that can attend to join us in person on Tuesday 18th October in Parliament Square from 1-3pm, we also have a virtual action that you can do from home!

We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the Wellcome Trust, the biggest funder of medical research in the UK, to commit significant funding to ME.  

ME has been neglected, ignored and stigmatised for far too long and, as a result, hundreds of millions of pounds have been missing from ME  biomedical research and this has to change.

We are delighted to get so much support from MPs. Emma Lewell-Buck MP, Hywel Williams MP and Alex Chalk MP, Emma Lewell-Buck MP, Hywel Williams MP,  Ben Lake MP, Alex Chalk MP, Fleur Anderson MP, Ben Bradshaw MP, Lord Bethell and Baroness Scott of Needham Market have all accepted our invitation and Lord Bethell will speak.

Lord Bethell, Baroness Scott and Fleur Anderson MP have all accepted our invitation. 

Lord Bethell has kindly agreed to speak.


Step 1: Take a picture of yourself holding a red thread

Here are sample photos to help demonstrate what we are imagining. You can of course take a picture from your bed. You do not need to be standing to take this picture.

Step 2: Write or email the Wellcome Trust

Use our sample email/letter templates to write to the Wellcome Trust.   Link here.

The first version can be used if you are sending it before #MillionsMissing and the second after the event taking place on 18th October. Please add as many personal details as possible – we want to challenge their heads and touch their hearts.

Lastly, add your picture holding a red thread or post them a piece of red thread to illustrate the connections between ME and other illnesses.  You can send your message without a photograph or piece of thread, the important thing is to share your story.

Step 3: Post Your Photograph on Social Media on October 18th

You can do this if you write to the Wellcome Trust or not, we know that everyone has different levels of energy! 

Share your image online on 18th October and tag @meactnetuk, @wellcometrust and include  #WeAreAllConnected, #MillionsMissing

We have some fantastic speakers planned. Prof Douglas Kell from Liverpool University will talk about his  micro clot research.  Hayley Valentine-Howard will talk about how ME affects pregnancy and its implications on delivery and the postnatal period.  Sarah Boothby, Maeve Boothby O’Neill’s mother, a registered social worker, will talk about her advocacy for families where death from ME is a possibility.

We want to illustrate our connections by linking a chain of people across Parliament Square, joined by red threads.  If you have red thread, ribbon, yard or wool you would like included please bring it with you on the day.  

We will send you home with a piece of thread and an action to take to lobby the Wellcome Trust for more research funding for ME. Link here.

If you are planning to come to Parliament Square please meet on the west side of the square, near the Mahatma Gandhi statue.  If you are using a wheelchair please use the route marked on the map in red. The route at the top of the square, past the statue of Winston Churchill, has steps to navigate. 

If you need to rest then you are welcome to bring folding camping chairs.  The bye-laws that govern Parliament Square do not allow any beds, loungers or any type of tent or gazebo so please do not bring any.  

However, we have obtained special permission for a limited number of people to bring soft mats to lie on if needed due to ill health.  Please note that this doesn’t include camp beds or loungers.

There is no way of stopping and unloading in Parliament Square but there are public car parks nearby. More information on Westminster Council’s website https://www.westminster.gov.uk/parking/visitor-parking-information

The nearest tube station is Westminster which is on the Jubilee, Circle and District lines.  It’s a 10 minute walk from Victoria mainline station and is on many bus routes.  For more information visit the Parliament Square website https://www.london.gov.uk/about-us/visiting-parliament-square-garden.

We recommend that you wear masks, if you are able, if travelling by public transport.  We will ask people to socially distance themselves along the red thread.

Looking forward to meeting up in person again.

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