News

Potential merger: share your views and questions

September 07, 2021

For the past month, our Board of Trustees have been exploring a potential merger with UK charity The ME Trust, with a view to making a decision in mid-September. To inform this process…

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Letter to NICE: concern over guideline delay

May 04, 2021

WEDNESDAY 12 MAY UPDATE Response from NICE now added, please see belowOur Chief Executive, Sonya Chowdhury, has written to the National Institute of Health and Care Excellent (NICE)…

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​Survey: the impact of Covid on people with M.E.

March 22, 2021

Action for M.E. and its partner #MEAction UK are today launching a survey to find out the effect that Covid-19 has on people with M.E Sam Bromiley, Participation and Influencing Officer…

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​International M.E./CFS family impact study

January 26, 2021

The opportunity to take part in an international research study looking at the impact of M.E./CFS on quality of life of patients and their family members is open until 31st March 2021.…

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National Strategy for Disabled People: have your say

January 25, 2021

The Disability Unit in the Cabinet Office is currently developing a National Strategy for Disabled People, scheduled for publication in spring 2021. To help inform the strategy, which…

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​Draft NICE guideline for M.E.: have your say

November 10, 2020

The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS. Updated guidance has been long-awaited…

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Invite your MP to the next APPG on M.E.

November 05, 2020

A second All-Party Parliamentary Group (APPG) meeting for M.E. in as many months is taking place in November. Following October’s APPG on welfare benefits, this meeting will focus on…

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Reminder: NICE draft guideline to be published 10 Nov

October 27, 2020

Please note that the updated NICE draft guideline for M.E. is scheduled to be released two weeks today, on Tuesday 10 November.Following the release of the draft guideline, there will be…

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​BACME position paper: comment and feedback

October 21, 2020

The British Association for CFS/M.E. (BACME), a network for UK clinical M.E. professionals, aims to “champion clinically effective practice in treating CFS/ME [sic] and other primary…

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First PSP steering group meeting to take place today

October 09, 2020

The first meeting of the newly formed M.E./CFS Priority Setting Partnership (PSP) Steering Group is taking place later today. The project, supported by three Government-backed research…

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M.E. petition to Scottish Government now closed

August 26, 2020

The Scottish Government’s Petitions Committee has ended its work on ME Action’s petition, supported by Action for M.E., calling for more investment research, training and education…

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Sign our letter calling to halt the disability tax

August 13, 2020

Action for M.E. Chief Executive Sonya Chowdhury has written an open letter to the Chancellor, Rishi Sunak, opposing plans for a new tax for online shopping.A new tax like this will…

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See our survey feedback from people with severe M.E.

August 06, 2020

Our Big Survey that we carried out last year gave us the chance to hear from over 4,000 people with M.E. This included hearing from children and adults with severe M.E.Feedback from…

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See Scope's open letter to the PM

July 16, 2020

UK disabilities charity Scope have written an open letter to the Prime Minister, calling on him not to forget disability equality in the Government's recovery plan, through the pandemic…

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Highlighting M.E. in two parliamentary inquiries

April 30, 2020

Action for M.E. has responded to two important House of Commons inquiries focusing on the impact Covid-19 and the lockdown has had on people with M.E.Over the past few months we have…

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Tell UK Gov your experience of COVID-19 support

April 16, 2020

Can you share your experience to help the UK Government understand the impact of the lockdown and Coronavirus situation on people with M.E. and other long-term conditions?We are asking…

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Updated resource: pacing for people with M.E.

February 18, 2020

Fully revised for 2020, our comprehensive pacing guide is based on the insight and experience of people with M.E.Pacing is a an approach that can help people with M.E. take control…

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Neurological care and support in Scotland update

February 03, 2020

Last month the Scottish Government launched the Neurological care and support: Framework for action 2020-2025. This framework sets out their vision for driving improvement in the care…

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