News

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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​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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​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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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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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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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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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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​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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​Join us for #DADvirtual on Sunday 25 October

October 19, 2020

To raise awareness of M.E. and the burden it places on the lives of over 250,000 people in the UK, Action for M.E. will be taking part in the Virtual Disabilities Awareness Day event…

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Knighthood for Professor Stephen Holgate

October 12, 2020

Professor Stephen Holgate has been knighted for services to medical research in the 2020 Queen’s Birthday Honours List. Stephen, who works as ‘Medical Research Council Clinical Professor…

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Fundraiser of the week: our virtual London Marathon team

October 09, 2020

On a miserably rainy Sunday last weekend, not only did Joe, Steve, David, Jeanette, Phil and Sophie decide to head outside, they took part in the Virgin Money London Marathon: The 40th…

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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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Fundraiser of the week: Danny and his ink cartridge initiative

October 02, 2020

Our fundraiser of the week is Danny, who has collaborated with his local GP surgery to raise funds for Action for M.E. Through Recycle4Charity scheme, Danny has set up ink cartridge…

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Learn more about the winter flu jab

October 01, 2020

If you’re unsure about what events this year have meant for getting your flu vaccine this winter, consider checking out our ‘Winter flu jab’ page on our website setting out information…

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Check out Astriid's latest 'ME in the workplace' webinar

September 29, 2020

This National Inclusion Week, we’re pleased to be supporting specialist employment charity Astriid, hosting a second 'ME in the workplace' webinar following the success of their first…

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Disability tax update

September 24, 2020

The Chancellor has announced that there will no longer be an Autumn Finance Statement, within which there had been proposals to introduce a new tax on online shopping. The proposed…

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Useful resources following yesterday’s Covid-19 restrictions

September 23, 2020

With yesterday’s announcement about new UK restrictions relating to Covid-19, we know lots of you may be feeling concerned, let down and frustrated. While for many with M.E., lockdown…

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Fundraiser of the week: Andrew Maybury

September 11, 2020

Our fundraiser of the week, Andrew Maybury, is taking part in the Great North Run Reimagined on Sunday.It’s a challenge that the majority of people with M.E. would be unable to even…

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Fundraiser of the week: Emily's Yorkshire Three Peaks team

September 04, 2020

Our fundraiser of the week is Emily and her team of Masie, Sacha and Kathryn, who walked, climbed, and scrambled the Yorkshire Three Peaks Challenge together on 25 August in support…

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​Join Astriid's 'Balancing work with M.E./CFS' webinar

September 02, 2020

This summer, we have been in conversation with Astriid, a specialist employment support charity. We are delighted to now be working with them to grow their new Community for M.E./CFS.…

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Fundraiser of the week: our RideLondon participants

August 28, 2020

“My Dad and I chose a lovely sunny morning last week to ride, taking a nice long loop around the canal and we even threw in a hill or two!” – Josh, Action for M.E. Fundraising Officer…

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Fundraiser of the week: Skydiving Janice

August 21, 2020

“M.E. has affected my family for several years… I’ve seen first-hand how M.E. can affect people and more awareness is needed.” Our fundraiser of the week is skydiving Janice, who…

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Join our free online self-advocacy workshops

August 19, 2020

Following the success of our free online self-advocacy workshop in July, we’re pleased to announce that we will repeat the workshop in September and October.Led by our experienced Advocacy…

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Fundraiser of the week: raffle ticket-selling Catherine

August 14, 2020

Our fundraiser of the week is Catherine, thanks to her impressive raffle ticket-selling exploits. Catherine, whose husband has M.E., raised an incredible £320 selling raffle tickets…

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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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Join Josh in taking on the Free Cycle challenge

August 12, 2020

Action for M.E.’s Josh is taking on the RideLondon Free Cycle challenge in support of his brother, who has M.E. We’re just a few days away from the 2020 My Prudential RideLondon,…

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Severe M.E. Day 2020: Rose's Diary

August 08, 2020

“I have had severe M.E for 21 years and been housebound for that period. I do not know how I have survived, but I have. The challenge is beyond the disabling symptoms. The circumstances…

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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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PhD student Josh publishes genetics and M.E. review

August 04, 2020

One of the two biomedical PhD students we are funding has published a paper looking at genetics and M.E. Action for M.E.-funded PhD student Joshua Dibble, M.E. patient Simon McGrath…

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Fundraiser of the week: Alex's virtual Great North Run

July 31, 2020

Our fundraiser of the week is Alex, who’s not letting cancelled events get in the way of his fundraising efforts. Having had his plans to take on the Great North Run scuppered by last…

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Support Action for M.E. in online charity poll

July 31, 2020

How would you like to save money on your online purchases while helping to raise money for Action for M.E.? We’re taking part in the My Favourite Voucher Codes charity poll for August.…

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Prudential RideLondon launch August fundraiser

July 27, 2020

What has wheels but no engine, and a big smile? A My Prudential RideLondon fundraiser for Action for M.E.! Following the cancellation of annual London cycling festival, Prudential…

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Fundraiser of the week: live streaming Tim

July 24, 2020

Today’s fundraiser of the week is Tim, who marked his 33rd birthday with a gaming fundraiser for Action for M.E. Tim organised a live stream on Twitch of ‘Sonic Boom: Rise of Lyric’…

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Minutes of Forward ME, Friday 10 July

July 21, 2020

The minutes of the latest meeting of Forward ME is now available. At the meeting the charities discussed the DecodeME and Priority Setting Partnership (PSP) research projects, along…

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Fundraiser of the week: Zara and her Jurassic hike

July 17, 2020

A huge thank you to this week’s fundraiser of the week Zara, who’s taking on the mammoth Jurassic Coast Challenge 2020, trekking from Poole Harbour to Weymouth to raise money for Action…

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Fundraiser of the week: all the Walk with M.E. teams!

July 10, 2020

With contributions now finalised after amazingly continuing to come in past the May 12 end date, our fundraisers of the week this week are all the teams who contributed to this year’s…

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New research paper: home healthcare for severe M.E.

July 06, 2020

A research paper from the team at the UK M.E./CFS Biobank, who have visited nearly 100 people bed- or house-bound with M.E., offers their reflections on healthcare for those severely…

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Fundraiser of the week: runner Melanie

July 03, 2020

Not one run, not two, but 40 - that's the number of runs our fundraiser of the week, Melanie Alflatt, is aiming to complete for the #GNRSoloChallengeMelanie is fundraising for her husband,…

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CEO Sonya Chowdhury on the potential rise of M.E./CFS

July 02, 2020

Our CEO Sonya Chowdhury spoke on BBC Points West today about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed…

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Action for M.E. update: extending our support service

June 30, 2020

In April, we launched our new Crisis, Advocacy and Support Service for people with M.E. of all ages, supporting you to make informed decisions, secure essential practical local assistance,…

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Fundraiser of the week: cream teas by Clare

June 26, 2020

What a week it's been, with the amazing launch of DecodeME, the M.E./CFS DNA study that aims to help us understand the disease and ultimately find treatments.As we co-lead this research,…

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"We can make DecodeME a success by working together."

June 25, 2020

Sonya Chowdhury, our Chief Executive, reflects on the years of dedication and collaboration by so many, that have led to this week's launch of

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DecodeME gets £3.2m funding for ME/CFS DNA study

June 22, 2020

Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.As part of the ME/CFS Biomedical Partnership, Action…

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Fundraiser of the week: 10-year-old Sonny

June 19, 2020

Sonny is 10 years old, and is cycling 100 miles this month to raise money for Action for M.E."I have chosen to raise money for Action for M.E. because my Mummy has had M.E. for 26 years,…

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EU parliament calls for more M.E. research

June 18, 2020

The European Parliament has passed a motion with an overwhelming majority calling for more funds to research M.E.In a resolution adopted yesterday, with 676 votes in favour, four against…

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Free online self-advocacy workshop, Wed 15 July

June 18, 2020

Do you live in Bath and North East Somerset? Do you have M.E./CFS, or care for someone who does? Would you like to improve your self-advocacy skills to ensure your voice is heard and…

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Action for M.E. CEO featured as a Lockdown Legend

June 12, 2020

Action for M.E. CEO Sonya Chowdhury has been featured by JustGiving as one of their Lockdown Legends due to her fundraising efforts with Curry for M.E.Within 24 hours of offering curry…

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Carer’s plea to Make Caring Visible

June 11, 2020

Action for M.E. is paying tribute to the men, women and children who play a vital role in caring for a loved one.People like Clare Jewkes who juggles her full-time job in the NHS with…

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Help shape the future research priorities for M.E./CFS

June 11, 2020

There is a fantastic opportunity for people to join a steering group to support an exciting project which will put people with M.E. at the forefront of future research into the debilitating…

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Supporting our carers during Carers’ Week 2020

June 08, 2020

Action for M.E. is celebrating Carers’ Week 2020 (June 8-14) and paying tribute to the men, women and children who look after a loved one who is living with M.E.If you give assistance…

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APPG on ME - Next meeting on Tuesday 16th June 2020

June 08, 2020

The APPG on ME will be resuming work on their report at a virtual meeting on Tuesday 16th JuneThis meeting will cover issues relating to children and adolescents with ME/CFS - including…

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Fundraiser of the Week: 8 year olds Ruth and Alice

June 05, 2020

We want to say an enormous thank you to Ruth and Alice, both aged 8, who are this week’s fundraisers of the week and raised an incredible £1,161 between them. The walk saw them take…

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Join us for a Cream Tea for M.E.

June 04, 2020

Whether you’re jam first, or cream first, we would love you to get involved in Cream Tea for M.E.With Friday 26 June being National Cream Tea Day, we are asking our supporters to create…

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UPDATE on the campaign to #IncreaseDisabilityBenefits

June 03, 2020

Action for M.E. is calling for action to stop thousands of disabled people from missing out on an emergency out of work benefit top-up to help them through the Covid-19 crisis because…

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Even though May is over, forget M.E. not

June 02, 2020

Anyone who has M.E. will know the illness isn’t just there for an awareness month, week or day, and we support people with M.E. to get their stories out there throughout the year.We…

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Huge thank you to our amazing volunteers and Trustees

June 01, 2020

From writing articles for InterAction to raising money through fundraising events, our fabulous volunteers are crucial in helping us to support thousands of people living with M.E.This…

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M.E. Awareness Month: sharing stories with millions

May 29, 2020

To everyone who took the time and energy to share their story with us this M.E. Awareness Month, allowing us to bring it to a wider audience on our social media channels, in newspapers,…

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Making caring visible: sharing carer stories

May 28, 2020

We know from our Big Survey last year that most carers of people with M.E. are family members or close friends. A recent survey by Carers UK found that 70% of unpaid carers are providing…

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Local M.E. support groups: holding meetings online

May 26, 2020

Has your local M.E. support group been trying to move meetings online?Simon, who appears in our latest short film about living with M.E. and lockdown, has shared some information and…

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New training module for healthcare professionals

May 22, 2020

A new training course has been produced for health professionals by Dr Nina Muirhead and the Medical Education Working Group. The working group was formed from members of the UK CFS…

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Fundraiser of the week: Nat and her amazing new do

May 22, 2020

This week, we say a huge thank you to Nat who took on her own 2.6 Challenge to raise money for Action for M.E.Despite having no hairdressing experience and going at this challenge alone,…

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Avril: learning self management from people with M.E.

May 21, 2020

Avril, our Project Officer in Scotland, shares her thoughts on self-management in a new blog for Health and Social Care Alliance Scotland. She says:"Normally I work on the Mentor M.E.…

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Action for M.E. on the Spoonie Village podcast

May 19, 2020

Action for M.E. is delighted to feature in one of the latest podcasts from Spoonie Village.Clare Ogden, our Head of Communications and Engagement, shot the breeze with Hayley and Tom…

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CEO comment on early intervention study for CFS

May 18, 2020

A paper has been published, reporting on an unsuccessful feasibility study of early intervention to prevent CFS in adults.It concludes: "A randomised controlled trial to test an early…

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Experts by experience: Daisy, Naomi and Simon

May 18, 2020

Living with M.E. can often force people to become experts at self-care, careful planning, energy-management, learning to say no, living with uncertainty, coping with isolation… the…

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Sue's M.E. story: "It was like losing my identity"

May 13, 2020

Sue Hardy was working as a nurse when she began struggling with her health. After gallbladder surgery that she believes "was the final nail in the coffin." Sue was diagnosed with M.E."There…

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Celebrating steps this M.E. Awareness Day

May 12, 2020

Today, M.E. Awareness Day, marks the end of this year’s Walk with M.E. challenge. We want to say an enormous thank you to all our Walk with M.E. fundraisers for raising awareness, walking…

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11 to 17 May is M.E. Awareness Week

May 11, 2020

This week is M.E. Awareness Week.We are sharing stories of people with M.E. each day, like this one from a supporter in the North West:“This is a serious and long-term illness that…

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Countess of Mar retires: share your message of thanks

May 04, 2020

Action for M.E. would like to extend our sincere and grateful thanks to the Countess of Mar, who has announced her retirement from the House of Lords following almost 45 years of service.Margaret,…

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Fundraisers of the week: our eggsellent 2.6 Challenges

May 01, 2020

This week, we have three amazing fundraisers of the week: our 2.6 Challengers.Like so many charities, we rely on our brilliant supporters taking part in fundraising events to support…

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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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This M.E. Awareness Month, your story matters

April 30, 2020

M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other.While the world has changed in…

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Curry with M.E. total so far: an amazing £10,585

April 28, 2020

We would like to say a huge thank you to everyone who has supported our CEO Sonya Chowdhury's 2.6 Challenge.Her take on this UK-wide campaign is Curry for M.E., walking 2.6 miles to…

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Sonya's 2.6 Challenge: Curry for M.E.

April 23, 2020

Like so many other charities, Action for M.E. relies on our brilliant fundraisers taking part in fundraising events to support our vital work.The cancellation of these events due to…

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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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Join the Priority Setting Partnership Steering Group

April 15, 2020

An exciting opportunity has opened up for people to join the steering group for the new Priority Setting Partnership (PSP) which is being run by Action for M.E. and the James Lind Alliance.This…

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