United Kingdom: Action for ME (AfME) news

My initial reaction to Jeremy Hunt as a Parliamentary Champion was very negative, however on further reflection and further announcements of other Champions, I have to recognise Action for ME have got together a very broad range of parliamentarians:
  • Fleur Anderson MP
  • Debbie Abrahams MP
  • Baroness Scott
  • John McDonnell MP
  • Jess Phillips MP
  • Lord Bethell
  • Monica Harding MP
  • Steve Race MP
  • Jo Platt MP
  • Max Wilkinson MP
  • Dame Harriet Baldwin
  • Paul Waugh MP
  • Tessa Munt MP
  • John Milne MP
  • Wendy Chamberlain MP
  • Graeme Downie MP
  • Alison Hume MP
  • Ruth Jones MP
  • Sir Jeremy Hunt MP
  • Siân Berry MP
See https://www.actionforme.org.uk/campaign/parliamentary-champions-network/

Action for ME say:

Our network of Parliamentary Champions are our 'go-to' individuals when engaging with Government and building support for our campaigns more broadly in Parliament and beyond.

Our champions are supportive of our work to create a world without ME and give a voice to the estimated 1.35m people in the UK who live with ME or ME-like symptoms, including post-exertional malaise.

Parliamentary Champions support us in raising awareness of ME by helping to include ME and related issues in parliamentary business and working with media to highlight key campaigns.

MPs and Peers have a wealth of knowledge so parliamentary champions may also suggest other ways to raise the profile of ME according to their skillset

Typical activities undertaken by a parliamentary champion may include one or more of the following:

  • Tabling written and oral questions on ME
  • Tabling and supporting debates on ME
  • Sponsoring events in Parliament.
  • Writing opinion pieces for national and local press.
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Cinders66 said:
It is reflecting patient will. Patients have fought a long and hard battle to get m.e put alongside Chronic Fatigue syndrome after years of seeing
CFS scorned & most would rather it replace CFS entirely. I was just saying to my mum today it was crazy to use a name based around chronic fatigue, when my carer (who cycles 5 miles to get to mine, cycles 5 miles back, and is then going to take her children swimming) claims her joint disorder causes “chronic fatigue” also. We are allowing an immediate misapprehension about our disease - an illness that at best significantly limits & at worst can decimate. Also, I don’t think people’s chances trying to stand on a street corner with a collection tin for an illness called CFS is as good as if it had any other less trivialising name. This should warn us how detrimental keeping the name CFS is, especially when we are left to fund all our own research.
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It's not my will. Using ME/CFS is the least worst solution until we actually find out what is going on with us. Myalgic Encephalomyelitis is simply inaccurate, particularly given the lack of evidence for inflammation of the brain and spinal cord.
 
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