News

Action for M.E. to merge with the ME Trust

September 17, 2021

On 16 September 2021, the Action for M.E. board approved a decision to merge with The ME Trust following a process of due diligence started in June, and after consulting with key stakeholders…

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NICE guideline delay: David Tuller's letter

September 16, 2021

Action for M.E. is among more than 100 UK and international charities, organisations and support groups, alongside 150 scientific and clinical experts, who have co-signed a letter from…

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M.E. and Long Covid discussed on Times Radio

September 11, 2021

Last night, our Chief Executive Sonya Chowdhury and our Medical Adviser Dr David Strain appeared on Kait Borsay’s Times Radio Show to discuss M.E. and Long Covid. A recording of the…

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Answering your questions about our potential merger

September 09, 2021

Thank you so much to those that have shared the views, questions and concerns about the potential merger between Action for M.E. and The ME Trust. There is still time to let us know…

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Free self-advocacy workshop: book now

September 08, 2021

Would you like to share your experience and develop skills to advocate for your needs at work?Led by our experienced Advocacy Officers, our Self-Advocacy in Employment Workshop webinar…

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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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Forward-ME on NICE guideline roundtable

August 31, 2021

Last week, the National Institute of Health and Care Excellence (NICE) announced that, following the pause to the publication of it guideline on diagnosing and managing M.E./CFS, it…

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AGM 2021

August 25, 2021

You are invited to our 2021 AGM where you can meet Action for M.E. staff and Trustees, and hear how we've worked with and supported people with M.E. over the past financial year, along…

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Action for M.E. in the news

August 25, 2021

In the three weeks since our press briefing to journalists, we’ve received an unprecedented amount of coverage from all kinds of news outlets. Our intention from the briefing was to…

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M.E. featured on Woman's Hour

August 24, 2021

Today, BBC Radio 4’s Woman’s Hour programme featured a 13-minute segment on M.E. and Long Covid, as requested by multiple listeners as part of Listener Week 2021. The two guests were…

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NICE Guideline delay – What you can do

August 24, 2021

We understand that many people in the community may be angry or anxious because of NICE’s decision to delay publication of their new guideline. We have been working with other M.E./CFS…

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Essential website maintenance on 25 August

August 20, 2021

On Wednesday 25 August our server will be undergoing an essential upgrade to ensure our website continues to perform as effectively as possible, and keep any data you share with us…

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Guideline delay questioned on Today programme

August 18, 2021

Interviewed on BBC Radio 4’s Today programme this morning (listen again online from 07.53) our Chief Executive Sonya Chowdhury urged the National Institute for Health and Care Excellence…

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M.E. charities baffled by delay to NICE guideline

August 17, 2021

Statement on the delay to publication of the NICE guideline on diagnosis and management of M.E., on behalf of Forward ME, Action for ME, ME Association, Doctors for ME, and ME Research…

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New petition Equity for M.E. launches

August 04, 2021

Today we're launching a petition calling for the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid. Hundreds of thousands…

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Action for M.E. and ME Trust exploring a merger

August 04, 2021

On 3 August 2021, the Action for M.E. board approved a decision to explore a merger with The ME Trust after a process of due diligence started in June. The ME Trust is a UK charity…

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ACT4ME launch July action

July 26, 2021

The Act4ME Network, which brings together people with M.E./CFS to amplify our voice and increase our influence, take part in a collective action once a month. For July, we have asked…

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NICE guideline for M.E.: three weeks to go

July 26, 2021

With just three weeks until the new NICE Guideline is published we are aware that many people with M.E./CFS may be feeling anxious about what is included. Since its consultation…

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New Health and Disability Green paper published by DWP

July 26, 2021

Last week the Department for Work and Pensions (DWP) published the Health and Disability Green Paper. During the past year we have been able to meet representatives of the DWP and Cabinet…

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Free workshops for 15 to 18 year olds

July 26, 2021

Supporting by BBC Children in Need, our free Breaking Isolation workshops are an exciting opportunity to meet other children and young people who have M.E., to get to know each other…

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Action for M.E. comment on Sunday Telegraph article

July 25, 2021

On Friday 23 July 2021, Action for M.E. was contacted by a journalist from The Sunday Telegraph and asked to provide comment on a complaint reportedly lodged with the Charity Commission…

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Walk with M.E. reaches half way point

July 21, 2021

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Dr David Strain on M.E. & long term impact of Long Covid

July 09, 2021

With Covid-19 restrictions lifting later this month, our medical advisor Dr. David Strain warns about the long-term threat Long Covid poses to young people - drawing comparations with…

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​Meet our new Medical Advisor, Dr David Strain

July 01, 2021

We’re excited to announce the appointment of Dr David Strain as our Medical Advisor.Dr Strain brings a wealth of clinical and academic experience to our charity, as Senior Clinical…

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Walk with M.E. 2021 has officially begun

June 23, 2021

Although we’ve got lots of teams and individuals signed up to take part this year, there’s always room for more. We’ll be running mini-competitions and raising funds and awareness…

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Two weeks to send in your research ideas

June 22, 2021

A major project is looking for your input. They want to know what research you think should be funded in the future, and the deadline for adding your ideas is fast approaching. Your…

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Letter to Sunday Times: Harmful Long Covid article

June 16, 2021

We were disappointed to read the unsubstantiated and harmful opinions of psychiatrist Jeremy Devine in The Sunday Times on 13/06/2021. We’re glad other experts disagreed with his views…

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Huge thank you to our amazing volunteers

June 04, 2021

This Volunteers Week, we want to say a huge thank you to every one of our volunteers who makes a real contribution to helping us support people with M.E.We are also hugely grateful…

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The difference you made this M.E. Awareness Month

June 02, 2021

“With the restrictions of having M.E. it feels like I have been in lockdown for over 30 years. Lockdown will continue for people with M.E./CFS and other chronic illnesses.” Mary, pictured,…

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Walk with M.E. 2021 starts today!

June 01, 2021

Walk with M.E. launches today! The sun is shining and we have 12 teams signed up and ready to start counting their collective steps, to raise funds and awareness for people with M.E.…

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Dr David Strain in latest Learn about M.E. podcast

May 28, 2021

Clinician and researcher Dr David Strain talks about working with people with M.E. and Long Covid in the latest episode of our Learn about M.E. podcast series, out today. Complementing…

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Join our new Act4ME network

May 27, 2021

People with M.E., carers and supporters are working together as part of our new Act4ME Network, launching today, to contribute to lasting change for adults, young people and families…

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Responding to questions about Abilify

May 21, 2021

This week there have been lots of questions and discussion on our Twitter feed about a medication called Aripiprazole, more commonly sold as Abilify.Anecdotally, some people with M.E.…

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Trans-Atlantic research fellowship announced

May 12, 2021

Action for M.E. and US charity Solve ME are excited to share that Profs Chris Ponting and Liz Worthey will work with postdoctoral fellows as part of our recently announced trans-Atlantic…

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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 results so far: impact of Covid on M.E.

April 29, 2021

Covid-19 has a significant impact on symptoms for people with M.E., according to initial findings of the ongoing survey we're conducting with #MEAction UK and #MEAction Scotland.Gathering…

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Celebrating five years of Mentor M.E.

April 28, 2021

Bringing together people with M.E. for mutual peer-support in Scotland over five years, our brilliant Mentor M.E. project has come to an end. Mentors and mentees marked the end of…

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You can shape the future of M.E. research

April 19, 2021

Could your ideas shape the future of M.E. research? The M.E./CFS Priority Setting Partnership (PSP), led by a Steering Group of people with M.E./CFS, carers and health professionals,…

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Captain Tom 100: do it your way

April 15, 2021

London Marathon Events have teamed up with the Captain Tom Foundation to host the Captain Tom 100, a sponsored event to celebrate Captain Tom’s life and raise vital funds for charities…

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Response to Newsnight item on treatment of long Covid

April 09, 2021

Last night’s edition of Newsnight on BBC2 tackled the issue of treatment for long Covid and drew parallels with treatment options for M.E./CFS. There are some striking similarities…

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APPG on M.E. to take place on 19 April

April 08, 2021

The Annual General Meeting of the All-Party Parliamentary Group on M.E. (APPGME) will take place on Monday 19 April between 11:00 – 12:00.This meeting is for MPs only and anyone can…

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​DecodeME webinar on Thursday 15 April

April 07, 2021

On Thursday 15 April, from 6.00-6.45pm, the DecodeME Management Group will be hosting a live Q+A webinar on the DecodeME Facebook page. The webinar will focus primarily on the recruitment…

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NICE guideline delayed until August 2021

March 30, 2021

The National Institute for Health and Care Excellence (NICE) emailed stakeholders yesterday to let us know there will be a delay in the publication of its new guideline for diagnosing…

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May elections: contact your candidate about M.E.

March 29, 2021

Many areas across the United Kingdom have now entered a time of political purdah – the name given to the time between when an election campaign officially starts and when the vote is…

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Get involved with the Last Photo Challenge

March 26, 2021

The ever supportive and creative Danny Redhead is back with his latest fundraising idea - the #LastPhotoChallenge. Danny (pictured centre), who we’ve featured a number of times due…

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National Day of Reflection

March 23, 2021

While lockdown may be ending soon for many across the country, thousands of people with M.E. have been in lockdown for decades and will continue to live a life in lockdown even when…

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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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Today is Young Carers Action Day

March 16, 2021

This annual event, organised by Carers Trust, has taken place over the past six years to raise awareness of young carers and the contribution they make to their families and local communities.…

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CEO responds to letter in The Guardian

March 15, 2021

On 11 March a letter was published in The Guardian claiming that those with post-Covid fatigue syndrome should not be discouraged from trying graded exercise therapy. Along with other…

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Fundraisers of the week: Seven friends do Route 66

March 12, 2021

These amazing seven friends are raising funds for Action for M.E. by running or cycling the length of the iconic Route 66, a gruelling 2,280 miles. Jake, Chris, Dan, Ian, Matt, Paul…

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Herald article warns of M.E. risks

March 09, 2021

An article in the Herald Scotland has warned of the risk of a ‘tidal wave of post-pandemic M.E’. The piece highlights how previous mistakes made with M.E. are now being repeated…

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Proud to be partnering with Solve M.E.

March 08, 2021

Action for M.E. is pleased to announce its trans-Atlantic partnership with US charity Solve M.E., focused on enhancing the wellbeing of people with M.E., raising awareness, delivering…

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Fundraiser of the week: Rob cycles 1,084 miles

March 05, 2021

Not everyone can say they’ve cycled from Land’s End to John O’Groats (1,084 miles) in 84 days. But our Fundraiser of the Week, Rob, can! This is not the first time Rob has been FOTW…

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​Action for M.E. comment on Government Budget

March 03, 2021

Today, the Chancellor will be unveiling his Spring Budget, with the UK Government set to announce a 6-month extension to the £20 uplift to Universal Credit.  This is welcome news. However,…

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Workshops for young people with M.E.

March 02, 2021

Our Breaking Isolation workshops are an exciting opportunity for children and young people who have M.E. to get to know each other and take part in fun games and creative activities.…

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​Action for M.E. joins Long COVID Alliance

March 01, 2021

Action for M.E. has joined 50 international partner organisations to form the Long COVID Alliance, an organisation with aims to educate policy makers and accelerate research to transform…

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BBC Horizon on M.E. and Long Covid

February 26, 2021

We were very pleased to hear Dr David Strain highlight the fight for people with M.E. to get recognition, respect and research on BBC Horizon last night. Discussing his work with people…

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More than 1,000 survey responses: add yours now

February 25, 2021

More than 1,000 people have so far completed a survey which researchers from the University of Cardiff hope will help better inform healthcare workers about the needs of families and…

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Clare talks M.E. on BBC Radio Tees

February 24, 2021

This morning, our Services and Communications Team Leader, Clare Ogden, appeared in place of CEO Sonya Chowdhury on the Neil Green show on BBC Radio Tees to discuss M.E. and the lack…

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Sonya interviewed on BBC Radio Tees

February 23, 2021

Last week, the All-Party Parliamentary Group on Coronavirus called for Long Covid to be recognised as an occupational disease for frontline health and care workers."The long-term consequences…

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CPD module to assist health professionals

February 18, 2021

“Imagine feeling viral, exhausted, unwell and in pain, confined to your bed or house, lying in a dark room for years or even decades. The world has been shocked by the damage that viruses…

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Guardian article on Covid priority groups

February 15, 2021

“Sonya Chowdhury, the chief executive of Action for ME, said she was shocked that the condition (M.E./CFS) had been left out of category 6… Even mild viruses can cause flare-ups and…

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Join our UK-wide self-advocacy workshop

February 11, 2021

Following the success of our recent advocacy workshops for people in Bath and North East Somerset, we’re pleased to announce that we will repeat the workshop for people across the UK…

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Apply for your London Marathon 2021 place

February 05, 2021

“It means a great deal to myself, to Laura (Joe’s partner who has M.E.) and to the thousands of people who deal with this illness every day.” – Joe, who took part in the 2020 virtual…

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DBC report: the pandemic and legacy benefits

February 03, 2021

The Disability Benefits Consortium (DBC), a group made up of over 100 charities including the MS Society, Parkinson’s UK, and ourselves, has published a report on how the pandemic has…

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Join our free self-advocacy workshop

January 29, 2021

Following the success of our free online self-advocacy workshops in 2020, we’re pleased to announce that we will host more in February and March.Led by our experienced Advocacy Officers,…

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Our CEO responds to Prof Paul Garner

January 28, 2021

Action for M.E. CEO, Sonya Chowdhury, responds to Prof Paul Garner.This morning, Prof Paul Garner appeared on BBC Breakfast to talk about his recovery from Long Covid. Building on…

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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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Guardian column on M.E. and Long Covid

January 22, 2021

“If one good thing emerges from this pandemic, it could be more recognition and funding for people with ME/CFS.” Columnist George Monbiot wrote a piece in the Guardian yesterday about…

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Watch 'Demystifying ME/CFS' webinar

January 19, 2021

Last week, on Thursday 14 January, Dr Charles Shepherd from the ME Association, Dr Nina Muirhead, and Caroline Kingdon from the UK ME/CFS Biobank each gave presentations at the ‘Demystifying…

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Bath Half Marathon 2021

January 18, 2021

This year’s Bath Half Marathon is taking place on Sunday 5 September, with half the number of participants to adhere to social distancing measures. We're calling for people to run…

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M.E. referenced in House of Commons Long Covid debate

January 15, 2021

A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.…

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​Scotland consultation on Adult Disability Payment

January 14, 2021

The Scottish Government is consulting on the draft regulations for Adult Disability Payment (ADP), a new Scottish benefit that will replace Personal Independence Payment (PIP). Delivered…

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Joint charity statement on Covid-19 vaccine

January 13, 2021

For up-to-date information on the vaccine, including a template letter highlighting that M.E. is an underlying neurological condition that should be in priority group 6, please visit…

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'This is ME': a short film on Spoon Theory

January 11, 2021

“Back in 2019 when still in a bad flare up of M.E. I made a short film hoping to shed some light on our experiences with invisible illnesses and in particular the way in which our family/friends…

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Call for UK biomedical PhD Studentships

January 07, 2021

Action for M.E. is delighted to announce a call for applications for biomedical PhD studentships. Following the success of our Big Give Christmas Challenge, and the generosity of…

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Health Rising article shares info on Covid vaccines

January 05, 2021

M.E./CFS journalist Cort Johnson has written an article sharing information about Covid vaccines for people with M.E.This article lists nine vaccines that have been approved or are…

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Onwards and upwards, because of you

December 24, 2020

Ruth Richardson, Operations Director, reflects on 2020 and how your support means we can be here for even more people with M.E.Some people with M.E. who have contacted us for support…

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Our response to draft NICE guideline

December 23, 2020

Action for M.E. has responded to the consultation on the draft National Institute for Health and Care Excellence (NICE) guideline for M.E./CFS. While there are a number of positive…

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Penguin publish Maia’s letter from lockdown

December 21, 2020

A new book from Penguin, Letters from lockdown, brings together stories sent in by BBC Radio 4 listeners for its “Covid chronicles” series – including 14-year-old Maia-Simona, who has…

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Our Big Give final total is in

December 18, 2020

A big thank you to everyone who supported our Big Give Christmas Challenge campaign this year. Following a turbulent 2020, the campaign took on extra significance as a means to raise…

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NICE rapid response guideline on Long Covid

December 18, 2020

NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19. Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal…

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​Minister hears about issues facing people with M.E.

December 17, 2020

On Wed 16 Dec, as members of the Regional Stakeholder Network for Disability, Action for M.E. attended a roundtable discussion with Justin Tomlinson MP, Minister of State for Disabled…

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Forward-ME call for NICE guideline warning

December 10, 2020

The Forward-ME group has called for a health warning to put added to the existing NICE guideline for M.E. to limit potential damage through graded exercise therapy (GET). This comes…

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Best Patient Support award for Action for M.E.

December 08, 2020

We are pleased to announce that Action for M.E. has been named Best Patient Support Charity at the 2020 SME Southern Enterprise Awards.The annual Southern Enterprise Awards recognise…

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Thank you for your Big Give support

December 08, 2020

Thank you to everyone who has contributed to our Big Give Christmas Challenge 2020. One week on from when it started, the challenge has now come to an end.In what has been an unprecedented…

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Dr Nina Muirhead: take part in our new M.E. study

December 03, 2020

We are excited to promote a new international research study looking at the impact of M.E./CFS on the quality of life for people with M.E. and their family members. Dr Nina Muirhead…

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The Big Give 2020 is underway!

December 01, 2020

The Big Give Christmas Challenge 2020 is officially underway!Throughout our Big Give Christmas Challenge, from noon today to noon on Tuesday 8 December, all donations to us via the…

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This Big Give, help us support people like Alex

November 27, 2020

“I’m Alex, I’m 11 years old, and I’ve had M.E. for 2 and a half years. I’m mainly housebound/bedbound, a lot of people don’t understand M.E. and how one day you can look “healthy” and…

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​M.E. and Covid-19 vaccine: your questions

November 23, 2020

For up-to-date information on the vaccine, including a template letter highlighting that M.E. is an underlying neurological condition that should be in priority group 6, please visit…

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Fundraiser of the week: birthday fundraiser Lizzy

November 20, 2020

“It absolutely made my birthday, knowing that this would in turn help lots of other people, especially in such a difficult year.” Our fundraiser of the week is Lizzy, whose birthday…

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CEO Sonya talks M.E. on BBC Radio Bristol

November 19, 2020

Our CEO Sonya Chowdhury appeared on BBC Radio Bristol’s mid-morning show with John Darvall on Thursday 19 Nov. On the show, Sonya discussed the draft NICE guideline for M.E. that was…

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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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Fundraiser of the week: the ChallengeME team

November 06, 2020

“Their response has been overwhelming, with challenges including a 50-minute family disco dance, 50km walks and Hiking along the Yangtze River!” Emma and her team, who are undertaking…

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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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Key information following lockdown announcement

November 02, 2020

Following Saturday’s announcement that England is set to go into a second lockdown from Thurs 5 November until Wed 2 December, it’s understandable that you may have a range of concerns…

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Push for extension of local welfare assistance

October 29, 2020

Have you benefitted from support from local councils to help those struggling financially during the pandemic? The Trussell Trust have published a report making the case for extending…

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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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​Join our Breaking Isolation workshops

October 26, 2020

Funded by BBC Children in Need, our Breaking Isolation project is being co-designed and delivered by young people with M.E. The three-year project will see our steering group come…

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