About Action Now

Action Now, a patient-driven initiative that formed in April 2010, aims to make neuroimmune disease advocacy more accessible to sufferers and their loved ones by creating and promoting patient-friendly campaigns and keeping an up-to-date list of current actions. The UK based Policy Change Now campaign is an on-going Action Now initiative.

If you are interested in finding out more about our organisation, or would like to find out how you can get involved, please send an email to the following address: info@actionnow.co.uk


1. What is Action Now?

Action Now is a voluntary advocacy group set up by Andie Pring, Gabi Lewis, Jo Best, Nicky Reiss and Jan Laverick – all largely housebound / bedbound by ME. Action Now receives no funding.

2. What are the aims of Action Now?

To raise awareness of neuro-immune disease and enable sufferers to work together to bring attention to the way they are treated by government-run and publicly-funded organisations and departments, and by the media, with the overall goal of bringing about effective change in policy and health-care.

3. How is Action Now doing this?

By running campaigns that are easy for people to join in from their homes via the internet, providing letter templates for people who are too ill to write letters themselves etc., e.g.:

  • The UK Policy Change Now email campaign – engaging the Department of Health and the Medical Research Council in dialogue directly with individual patients.
  • The petition AYME-Denounce PACE and SMILE – calling for the Association of Young People with ME to retract its welcome of PACE results and its support of a study using children with ME/CFS as test subjects for the Lightning Process training programme.
  • ME/CFS Blogger Nation – a newly-created blog ring aimed at growing a global network and international community of people who write about ME or CFS.
  • Tweet for Neuroimmune Disease Awareness campaign.

Please see the website or Facebook page for details.

4. Is this just for the UK?

No – Action Now is dedicated to engaging UK government officials and effecting policy change in the UK but we also wish to raise awareness and offer support by encouraging participation in on-line global campaigns such as ME/CFS Blogger Nation.

We also strongly support fellow advocates’ campaigns and petitions from around the world – we do our best to keep an up to date list of these actions to aid participation. See our website and also our Facebook Note, which is updated regularly.

The Facebook XMRV News and Views group was created by Action Now and the COUNT ME IN event page is hosted by the XMRV News and Views group.

Action Now website: http://www.actionnow.co.uk/

Action Now on Facebook: https://www.facebook.com/pages/Action-Now/185879168107194?ref=ts

Action Now on Twitter – twitter.com@ActionNowInfo