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.
Virtual Actions
Step 1: Take a picture of yourself holding a red thread
Here are the simple steps to create this picture:
1) Take a picture of yourself holding a red thread.
2) Post the picture on social media on October 18th. Make sure to tag @meactnetuk and @wellcometrust and include #WeAreAllConnected, #MillionsMissing
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
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 .
You can help to change that. Use our sample email/letter templates (found below) to write to the Wellcome Trust. 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.
Please add as many personal details as possible – we want to challenge their heads and touch their hearts.
Lastly, if you take the picture from Action 1, you can add your picture to the email or letter of you holding a red thread or post them a piece of red thread to illustrate the connections between ME and other illnesses. This is not a requirement, so if you do not take a picture you can still send the email/letter.
#MEAction UK recommends that you copy and paste the wording below into an email or a document to print out. We suggest addressing your letters/emails to Alyson Fox, the Director of Research Funding at Wellcome Trust.
Send the letter/email to:
Alyson Fox
Address: Director of Research Funding
Wellcome Trust
Gibbs Building
215 Euston Road
London NW1 2BE
Email: [email protected]
Version 1 – Pre #MillionsMissing in Parliament Square on 18th October
Dear Alyson Fox,
We Demand Funding for the #MillionsMissing – We Are All Connected
The devastating effects of Long COVID are now being seen around the world but there is one community who knows that there is nothing new about the long-term consequences of infection. Before Long COVID there were already #MillionsMissing around the world, made up of individuals who got sick from infection and never recovered. They are people with Myalgic Encephalomyelitis (ME), a severely debilitating condition that affects millions of people across the world. The similarities between ME and Long COVID demonstrate the connections between these illnesses, a common thread which deserves effective research funding.
ME has been neglected, ignored and stigmatised for decades, resulting in low funding for biomedical research. As such fundamental questions about ME haven’t been asked, links with the aftermath of infectious diseases have been ignored and an area ripe for discovery has been overlooked.
I am asking the Wellcome Trust to commit to help restore the £100 million pounds of money missing from ME research. All people with complex chronic diseases deserve high-quality biomedical research funding.
OPTIONAL – PERSONALISED SECTION – Why this affects you, your family or friends.
On 18th October, hundreds of people, including those with lived experience, politicians and medical researchers, will come together in Parliament Square for our annual #MillionsMissing protest. We do this to demand that research funders step forward, include ME and commit to the £100 million missing from research funding.
OPTIONAL – You can include a piece of red thread/wool/ribbon OR a photograph to demonstrate the connections between people with ME and other conditions and how research into ME will help us all.
Thank you,
Version 2 – Post #MillionsMissing in Parliament Square on 18th October
Dear Alyson Fox,
We Demand Funding for the #MillionsMissing – We Are All Connected
The devastating effects of Long COVID are now being seen around the world but there is one community who knows that there is nothing new about the long-term consequences of infection. Before Long COVID there were already #MillionsMissing around the world, made up of individuals who got sick from infection and never recovered. They are people with Myalgic Encephalomyelitis (ME), a severely debilitating condition that affects millions of people across the world. The similarities between ME and Long COVID demonstrate the connections between these illnesses, a common thread which deserves effective research funding.
For far too long fundamental questions about ME haven’t been asked, links with the aftermath of infectious diseases have been ignored and an area ripe for discovery has been overlooked.
OPTIONAL – PERSONALISED SECTION – Why this affects you, your family or friends.
On 18th October, hundreds of people, including those with lived experience, politicians and medical researchers, came together in Parliament Square for our annual #MillionsMissing protest. We did this to demand that research funders step forward and include ME.
ME has been neglected, ignored and stigmatised for decades and, as a result, funding for biomedical research has been very limited. I am asking the Wellcome Trust to commit to help restore the £100 million pounds of money missing from ME research. All people with complex chronic diseases deserve high-quality biomedical research funding.
OPTIONAL – You can include a piece of red thread/wool/ribbon OR a photograph to demonstrate the connections between people with ME and other conditions and how research into ME will help us all.
Thank you,
