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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…
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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.…
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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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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…
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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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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…
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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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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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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.…
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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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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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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…
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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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We highlight serious concerns with NHS Trust advice

April 20, 2020

Action for M.E. Chief Executive, Sonya Chowdhury, has signed an open letter calling for the withdrawal of an inaccurate and potentially harmful NHS Trust resource. Oxford Health…
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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.…
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UPDATE Priority shopping: "extremely vulnerable" list

April 09, 2020

Following the steps taken by Action for M.E. and other UK charities over the last few weeks, representatives from various supermarkets have responded detailing the steps they are taking…
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Priority shopping campaign UPDATE

April 03, 2020

On Friday 27 March, we wrote a letter to the UK Government and major supermarket chains, signed by members of Forward-ME and the All Party Parliamentary Group for M.E. We highlighted…
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Fundraiser of the week: birthday girl Jo

March 27, 2020

Jo Bradley who was diagnosed with M.E. in 2014 while working as a Retail Manager. She told us: “I wanted to raise money for Action for M.E. because of the support you’ve provided me…
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Action on urgent need for priority shopping

March 27, 2020

Action for M.E. has joined with other others to highlight the immediate challenge faced by people with M.E. in accessing food and essential supplies, and ask for immediate action. …
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Coronavirus Bill and Care Act concerns: tell your MP

March 23, 2020

Yesterday, Disability Rights UK shared its serious concerns about the implications of the Coronavirus Bill on human rights, particularly for disabled people and those with long-term…
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Fundraiser of the week: The Thunderbolt

March 20, 2020

This week’s fundraiser of the week is the team at the Thunderbolt pub in Totterdown, Bristol.Dave, landlord of the Thunderbolt, very charitably hosted an Action for M.E. fundraiser…
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APPG on M.E. update: biomedical research meeting

March 17, 2020

The All-Party Parliamentary Group (APPG) on M.E. held its first meeting on Tuesday 3 March, where biomedical research was discussed.Twenty MPs attended or sent staff to hear about the…
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Fundraiser of the week: Our Bath Half Team

March 13, 2020

This week’s fundraisers of the week are our brilliant Bath Half team who will be taking on 13.1 miles this Sunday! A huge thank you to Tom, Katie, Sophie and Ed who have so far raised…
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2020 CMRC conference videos now available

March 12, 2020

On Tuesday 10 and Wednesday 11 March the UK CFS and M.E. Research Collaborative (CMRC) held its annual conference in Bristol. Despite several international speakers being unable to…
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Exciting new project to set M.E. research priorities

March 10, 2020

A new project, supported by three Government-backed research funders, has been launched to help ensure that the M.E. research priorities that matter most to the people affected by the…
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Research conference this week: follow online

March 09, 2020

The sixth annual UK CFS/M.E. Research Collaborative (CMRC) conference will take place in Bristol tomorrow and Wednesday 11 March. Due to concerns over Coronavirus (COVID-19), a number…
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Fundraiser of the week: Marathon-running Tanya

March 06, 2020

This week’s fundraiser of the week is Tanya Jackson. Tanya’s daughter, Danielle, was diagnosed with severe M.E. 20 years ago at the age of 7, while Tanya experienced Chronic Fatigue…
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Update on Coronavirus and M.E.

March 04, 2020

The UK Chief Medical Officers have raised the Coronavirus (COVID-19) risk to the public from low to moderate. We appreciate that this may be especially worrying for those already…
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Roger Siddle appointed Chair of Board of Trustees

March 02, 2020

Action for M.E. is delighted to announce the appointment of Roger Siddle as our new Chair of Board of Trustees. Roger says: “Like many others, I have been struck and frustrated by…
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Fundraiser of the week: Hazel Wilcox and team

February 28, 2020

This week’s fundraisers of the week are Hazel Wilcox and her team. Hazel, whose sister has M.E., is taking part in Walk with M.E. with her team in order to support Action for M.E. and…
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Fundraiser of the week: Belinda and her handmade cards

February 21, 2020

Our fundraiser of the week is Belinda, who is donating money from sales of her handmade greeting cards.Belinda was diagnosed with M.E. and Fibromyalgia four years ago. She says:"In…
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Will your MP attend the APPG for M.E. in March?

February 20, 2020

The next meeting of the All Party Parliamentary Group for M.E. is taking place on Tuesday 3 March where the focus will be on biomedical research. You can still invite your MP to…
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Free research workshop in Bristol: all welcome

February 20, 2020

What big research questions do people with M.E., their carers and clinicians want answered?You are invited to a free workshop on Tuesday 10 March to start a conversation about addressing…
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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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Scottish Health Council survey of M.E. in Scotland

February 14, 2020

The Scottish Health Council (SHC) has launched a survey to gather the views and lived experience of people with M.E./CFS in Scotland. The survey was commissioned in response to questions…
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Fundraiser of the week: beer can man Nick West

February 14, 2020

We’re saying a hearty cheers and thank “brew” very much to today’s fundraiser of the week, beer can fan Nick West.Last year, Nick made it into the news when he donated part of his…
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Meet M.E. drop-in in Fife on 12 March: all welcome

February 12, 2020

We asked Zara, who attended one of our Meet M.E. drop-in events, what she loved about the session. She said:"Meeting other people with M.E... Knowing that people are interested in supporting…
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International #WomenInScience Day: CMRC speakers

February 11, 2020

“It’s shocking that so many people are living with this debilitating illness and there is so little attention on it," says Dr Sadie Whittaker. "I feel strongly that increasing recognition…
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Fundraiser of the week: Sarah and her team mates

February 07, 2020

"Together as a team we hope to raise awareness and funds for Action for M.E. so that they can make a difference to the lives of those with this invisible and greatly misunderstood…
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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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Fundraiser of the week: Bethan Jones

January 31, 2020

Bethan took part in Walk with M.E. 2019, in honour of her friend who has M.E. Bethan raised a brilliant £362 and raised awareness of the condition which has taken so much from her friend.…
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Team Action for M.E. seeks Bath Half runners

January 29, 2020

Last year, Daniel and our Bath Half team raised more than £2,522 to help us reach even more people with M.E. Daniel told us:“I was watching telly and came across a person with M.E.…
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Michael: "Mentor M.E. meant I was less isolated."

January 28, 2020

Michael has M.E. and lives in Stirling, Scotland.“Before, I found it difficult to accept my illness. Other people didn’t believe I was ill, as I looked OK to them. This made me not…
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Fundraiser of the week: Sarah Middleton and friends

January 24, 2020

Our fundraiser of the week is Sarah and her intrepid friends Catherine, Fran and Liz, undertaking the Yorkshire Three Peaks Challenge in April. "I’ve grown up with the Yorkshire Dales…
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Update on M.E. in WHO's latest disease classification

January 20, 2020

After years of hard work by M.E. advocate Suzy Chapman, the World Health Organisation (WHO) has doubled back on plans which would have made it even harder for people with M.E./CFS to…
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Fundraiser of the week: Genevieve Miles

January 17, 2020

“When I was 14 I became ill and never really got better," recalls our fundraiser of the week, Genevieve Miles. "Turns out I have M.E. It was boring, frustrating and so sad, I definitely…
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Holly: "Walk with M.E. seemed like the perfect fit"

January 14, 2020

Holly has been unable to leave her house since 2012. She told us:“M.E. has dramatically altered my life and the lives of those around me, especially my parents, who had to also become…
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CMRC conference: Physios for M.E. & medical education

January 13, 2020

A representative from Physios for M.E. has joined the Medical Education Working Group as part of the UK CFS/M.E. Research Collaborative (CMRC), which aims to identify the most effective…
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MPs come together to support M.E. Is yours on board?

January 10, 2020

Carol Monaghan MP will meet with MPs next week to reform the All Party Parliamentary Group for M.E. The group is holding a brief AGM on Tuesday 14 January, and MPs can put themselves…
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Mum Sarah: "It completely turned our situation around"

January 07, 2020

It's two years since Sarah's son Finlay, now 10, became ill with the flu, but didn't seem to be getting better. Four months later, Finlay was diagnosed with M.E.Sarah, who had the illness…
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Say yes to biomedical research: show your support

January 03, 2020

More than 1,500 people with M.E., carers, family members and friends have already shown their support for a potentially game-changing genetic study - but we need thousands more.You…
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Information and support over Christmas and New Year

December 19, 2019

Action for M.E.'s Information and Support Service is now closed for the Christmas break, earlier than expected due to staff sickness. It will reopen on Monday 6 January 2020. We will…
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M.E./CFS Biomedical Partnership: share your ideas

December 19, 2019

In November, the newly established M.E./CFS Biomedical Partnership met with Medical Research Council and the National Institute for Health Research to discuss an application for funding…
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Attending the CMRC’s sixth conference

December 18, 2019

The UK CFS/ME Research Collaborative (CMRC)’s sixth conference will take place in Bristol, Tuesday 10 and Wednesday 11 March 2020. You can now view the conference’s draft programme…
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General election: looking forward

December 16, 2019

We know that many of our supporters have questions about how the election result will impact their lives and those of others in the community. We have looked at the Conservative manifesto…
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Fundraiser of the week: Rachel's coffee morning

December 13, 2019

We’d like to say a huge thank you to our fundraiser of the week Rachel who recently hosted a coffee morning in aid of Action for M.E. Over the last month Rachel has hosted a stall…
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General election: next steps

December 13, 2019

After the results of the general election, you may have some questions about how the result will affect you and your family. As part of our work, we will be looking at the promises…
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Because of you, our Big Give total tops £140,300

December 11, 2019

We are thrilled to report that, with your support, our Big Give Christmas Challenge raised an incredible £140,313. From all of us here at Action for M.E., and on behalf of those…
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Because of you... we've reached our matchpot

December 08, 2019

Incredible! Thanks to the support of our amazing community we have reached our Big Give Christmas Challenge jackpot!Everyone at Action for M.E. would like to say a massive thank you…
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The Big Give Christmas Challenge 2019 is here!

December 03, 2019

The Big Give Christmas Challenge 2019 is here! Every donation we receive through the Big Give website between now and 10 December will be doubled whilst our match pot lasts.*Update…
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The Big Give Christmas Challenge 2019 - FAQ

December 02, 2019

The Big Give Christmas Challenge 2019 starts at noon on the 3 December, and will run until noon on Tuesday the 10 December. Throughout this week any donation made to us through the…
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Fundraiser of the week - Big Give 2019 pledges

November 29, 2019

We would like to use our fundraiser of the week to say a huge thank you to everyone who has already pledged to donate to us during the Big Give Christmas Challenge 2019. The Big Give…
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Parliamentary engagement: taking a stand for M.E.

November 29, 2019

This election we have written to 1,500 General Election candidates asking them to stand up for M.E. if they are elected.In our letters, we have shared information about the condition…
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ME/CFS Biomedical Partnership PPI Steering Group Update

November 28, 2019

SummaryOn Monday, the ME/CFS Biomedical Partnership met with Medical Research Council (MRC) and the National Institute for Health Research (NIHR) to discuss an application for funding…
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Only one week to go until the Big Give!

November 26, 2019

With only one week to go until the Big Give Christmas Challenge 2019 we wanted to share the Big Give official video, featuring Alexander Armstrong: The Big Give Christmas…
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No Isolation - AV1 Robot steering group

November 25, 2019

On Friday we attended a steering group for No Isolation government funded AV1 robot project. No isolation are reducing loneliness and isolation through ‘warm’ technology. Their AV1…
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M.E. and school: how can I help? Awareness raising session.

November 22, 2019

Yesterday over 60 education professionals who specialise in a variety of areas such as safeguarding, child protection, teaching and managing students with complex conditions attended…
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Fundraiser of the week - Elinor's 21st Birthday

November 22, 2019

We’d like to say happy birthday to our fundraiser of the week Elinor who is turning 21 today! She has generously asked her friends and family to donate to her Facebook birthday fundraiser…
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​GP home visits under threat

November 20, 2019

Action for M.E. has raised serious concerns with every Local Medical Committee (LMC) following the announcement of a motion at their conference by Kent LMC to stop home visits by GPs.…
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Fundraisers of the week: Andrew and Rob

November 15, 2019

We’d like to say a huge thank you to our fundraisers of the week, father and son duo, Andrew and Rob who have just completed the Men’s 10K Edinburgh 2019.When explaining their reasons…
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Fundraiser of the week - David's half marathon

November 08, 2019

Our fundraiser of the week is David who has recently taken part in the Hever Castle Half Marathon. When speaking about his reasons for supporting our charity, David tells us : “I'm…
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ME/CFS Biomedical Partnership to apply for funding

November 07, 2019

Led by biomedical researchers and patient representatives, including Action for M.E. Chief Executive Sonya Chowdhury, a newly established group called the ME/CFS Biomedical Partnership…
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​Edinburgh ME Self Help Group's AGM and open meeting

November 07, 2019

Open meeting - ‘ Sharing experiences of living (a better life) with M.E.’ On 26 October, we were invited to attend the Edinburgh ME Self Help Group’s (EDMESH) Annual General Meeting…
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December general election - key dates

November 07, 2019

Yesterday signified the first day of political purdah, meaning the time between when a UK election is announced and when that election is held. Over the next few weeks there will be…
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Meet M.E. - our second drop-in event in Inverness

November 06, 2019

On 26 October, we . co-hosted our second drop-in event for people with M.E. in Inverness. This was in partnership with M.E. Highlands and Islands Network and The Oxygen Works. Based…
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House of Commons Petitions Committee report on fireworks

November 05, 2019

Events such as bonfire night aren’t events that are celebrated by everyone. For people with conditions such as M.E./CFS it can be a very distressing and difficult time. Earlier this…
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Fundraiser of the week - Amber

November 01, 2019

We'd like to say a huge thank you to our fundraiser of the week Amber. Today she has cut off 16 inches of her hair (which will be donated to The Little Princess Trust) in order to raise…
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​InterAction needs you: Christmas customs

October 30, 2019

“If it falls on a day the salon is open, I have my hair done on Christmas Eve. I am always the last customer of the day, just before they have a little staff party. The atmosphere is…
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Temporary office closure on 31 October

October 30, 2019

Our office and phone lines will not be open tomorrow due to staff training. Normal office hours will resume on Friday 1 November.If you need information and support whilst we are away,…
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Watch our AGM & conference 2019 on YouTube

October 28, 2019

Recorded videos from our AGM and conference 'Are you listening to M.E.? Voices from Action for M.E.'s Big Survey' are now available to watch on YouTube. We have uploaded recordings…
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Fundraisers of the week - Paige and Hamish

October 25, 2019

We'd like to thank our fundraisers of the week Paige and Hamish for raising awareness of M.E./CFS and supporting our charity.When speaking about their fundraiser Paige told us:"Hamish…
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Our submission to the NICE call for evidence

October 24, 2019

Last month, the National Guideline Centre opened a call for evidence for studies into M.E./CFS. Commissioned by the National Institute for Clinical Excellence (NICE), this evidence…
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Attending the RCGP annual conference as part of Forward-ME

October 24, 2019

This week is the Royal College of GPs annual conference. Along with other charity representatives, our Policy Officer Sam Bromiley will host a Forward ME information stand, with the…
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​M.E. research: HRA reviews ethical concerns

October 22, 2019

The Health Research Authority (HRA) has published a report on its investigation into concerns relating to 11 M.E./CFS research papers. With a remit from the UK government to “protect…
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Early-bird registration now open: CMRC 2020

October 21, 2019

Early bird tickets are now available for the 2020 UK CFS/M.E. Research Collaborative conference, which takes place in Bristol on Tuesday 10 and Wednesday 11 March.These tickets are…
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Fundraiser of the week - Sal

October 18, 2019

Our Fundraiser of the week Sal who is currently climbing Mount Kilimanjaro in Tanzania - Africa's highest freestanding dormant volcano. She is completing this over the course of eight…
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How to attend our AGM and Conference via Webinar

October 14, 2019

As promised, we will be live streaming our AGM and conference, which is taking place tomorrow. There will be two separate webinars on the day, one in the morning and one in the afternoon.…
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Fundraisers of the week - Team Banana

October 11, 2019

Our fundraisers of the week are Team Banana, a group of eight friends who completed the 26 mile ‘Walk the Test Way’ challenge on Sunday. The group chose to support our charity in honour…
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Watch our AGM and conference live online next week

October 07, 2019

Registration for our annual AGM and conference is now closed. If you are unable to attend in person but would still like to watch – don’t miss out! We will be live streaming the event,…
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