Closed UK: DecodeME updates, was recruitment thread.

National Institute of Health Research's Clinical Research Network South West tweet

"Are you 16 or over, living in the UK with an ME/CFS diagnosis? @DecodeMEstudy wants to pinpoint the causes of ME/CFS and ultimately help find treatments. Sign up and complete the questionnaire about your symptoms and experience via the link below. decodeme.org.uk"

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AfME tweet

"Episode 8 of our Learn about M.E. podcast is live! We’re excited to release the next podcast episode in our Learn about M.E. series, focusing on the ground-breaking @DecodeMEstudy and why it's important to #pwME."

"You can listen here: ow.ly/qiEp50MSOzL The episode discusses the great need for this genetic research into such a neglected health condition and its potential to uncover new treatments for M.E. It also outlines how people can sign up to take part in the DecodeME study."

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A trick of a sort on a Facebook group is an admin can write @everyone and all members get a message that they are tagged in the thread.

A lot of messages to a Facebook group are only seen by a small number or percentage of members. Doing this would dramatically increase the numbers who would see a message. I think there are tens of thousands of people in the UK on ME/CFS Facebook groups if they could only be reached. This method might help reach more if people could persuade admins to do it for DecodeME messages.
 
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Dolphin said:
A trick of a sort on a Facebook group is an admin can write @everyone and all members get a message that they are tagged In the thread.

A lot of messages to a Facebook group are only seen by a small number or percentage of members. Doing this would dramatically increase the numbers who would see a message. I think there are tens of thousands of people in the UK on ME/CFS Facebook groups if they could only be reached. This method might help reach more if people could persuade admins to do it for DecodeME messages.
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Even if they would do it just for one sounds useful. Facebook is pretty hopeless for getting to people in my experience.
 
Blog: A visit to the UK Biocentre, https://www.decodeme.org.uk/a-visit-to-the-uk-biocentre/

"Claire Tripp – Patient and Public Involvement Team Member

Last month, I visited the UK Biocentre in Milton Keynes, along with Prof Chris Ponting and Dr Diana Garcia, the DecodeME project manager at the University of Edinburgh. The purpose of the visit was to personalise the work they are doing at the Centre for DecodeME and explain where they fit into the wider project. To look beyond the science, and the data, and instead to make it about the people who we are studying and why."

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Facebook: https://www.facebook.com/decodeMEst...KmdN8QPY1T3RTDYxAZoMcBQgH8CdxfDyNrC421F8MXRrl
 
Key passages Google translated:
Launched in Gütersloh at the founding meeting, the marketing association "Mirame Arts" intends to use targeted campaigns and projects to provide effective public relations and professional marketing for non-profit organizations in order to create even better framework conditions around the world in the fight against diseases to care.

Mirame is Spanish and means translated: Look at me! This is exactly where the 1st chairman Martin Hippe sees the purpose of the association. "To make people visible who are invisible to most." They want to give them a voice. About the 300,000 people in Germany who suffer from myalgic encephalomyelitis (ME/CFS), i.e. a serious chronic disease that can also be the result of a corona infection.
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The rest is an amenable discussion of ME/CFS (one heading reads, "Recognized as a physical illness since 1969, but still psychologized") and overview of the new organization:
A key reason for this: “The marketing of many non-profit patient organizations is not optimal. Due to a lack of money, there is often a lack of effective, professional public relations work,” reports Martin Hippe. “Mirame Arts” wants to help solve this problem “by supporting the organizations with good concepts and high-quality productions.” The goal is to keep pace with commercial providers and to assert oneself in the flood of information. This is to be achieved by a voluntary team of association members who have the appropriate skills due to their profession or other experiences. “We are looking for filmmakers, photographers and storytellers.
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InitialConditions said:
@Andy would you or someone from DecodeME be able to raise this with the MEA?
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Honestly, I don't feel that it would be right for us, as DecodeME, to ask a particular charity to copy what another charity might have done in terms of promoting us. We are grateful for all the support shown to us in all different forms; I know that the MEA has featured us in their members magazine, and I get the impression that they are the most active in terms of social media posts that promote us.
 
Andy said:
Honestly, I don't feel that it would be right for us, as DecodeME, to ask a particular charity to copy what another charity might have done in terms of promoting us. We are grateful for all the support shown to us in all different forms; I know that the MEA has featured us in their members magazine, and I get the impression that they are the most active in terms of social media posts that promote us.
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Agreed @Andy if ME Association members want to suggest ideas I would think contacting MEA direct through their email would be the best way.
 
Just reported via the website that I've received a mail today inviting me to take part, even though I submitted both the questionnaire and my sample last year (the sample has been received, but may not yet have been analysed).

Hopefully it's just an isolated glitch, but I thought I'd send a heads-up in case other registered participants have received the email as well.
 
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