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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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October 04, 2019
We’d like to thank Chelsea, our fundraiser of the week, who has raised an amazing £140 for us at her quiz night last week. We asked Chelsea to share a little bit about herself and her…
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October 03, 2019
3 October is National poetry day - 2019's theme is Truth. Today, we share a small collection of poetry created by those in our community talking about their every day truth of living…
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October 03, 2019
Cochrane Reviews, the gold-standard of systematic healthcare research reviews, has published an update of its review of graded exercise therapy (GET) for M.E./CFS. This comes under…
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September 27, 2019
We’d like to say a huge thank you to our fundraiser of the week, Tim, who is currently completing Hadrian’s Wall in order to raise funds for and support our charity. When speaking for…
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September 26, 2019
What's it like having a debilitating illness that some people don't believe exists? When it leaves you too unwell to leave the house, how do you tell your boss or your friends?
In…
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September 25, 2019
The deadline for applications to take part in the London Marathon 2020 on behalf of our charity close on 25 October – could you be a part of our team?Every year a team of determined…
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September 24, 2019
Action for M.E.'s AGM and conference "Are you listening to M.E.? Voices from Action for M.E.'s Big Survey" will be taking place on Tuesday 15 October at Allen and Overy, London. …
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September 20, 2019
Our fundraiser of the week is Lauren. Alongside her family, Lauren raised an amazing £120 for Action for M.E. on her hook a duck stall. We asked Lauren to tell us a little bit more…
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September 19, 2019
Caitlin is 17 and has been living with chronic health conditions including M.E./CFS for the last five years. She has produced a three part photography series which discusses the different…
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September 17, 2019
If you live in the Midlands or South West our Advocacy Service may be able to help you to access support, and help you understand your rights. Our advocates can explain processes in…
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September 13, 2019
Our fundraiser of the week is Sam who will be cycling 90km from London to Brighton. He is raising money for our charity in order to contribute to vital funding towards research in to…
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September 12, 2019
Our team in Scotland delivered their first M.E. awareness raising session in schools yesterday. Visiting a secondary school in Ayrshire, Theresa and Avril spoke with 50 young people…
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September 11, 2019
Caitlin is 17 and has been living with chronic health conditions including M.E./CFS for the last five years. She has produced a three part photography series which discusses the different…
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September 10, 2019
This week is Remember a Charity week – a national campaign to encourage people to leave a legacy to charities. Each year almost £3bn is donated to charities through gifts in Wills.…
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September 06, 2019
Action for M.E.'s AGM and conference "Are you listening to M.E.? Voices from Action for M.E.'s Big Survey" will be taking place on Tuesday 15 October at Allen and Overy, London.
“If…
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September 04, 2019
Caitlin is 17 and has been living with chronic health conditions including M.E./CFS for the last five years. She has produced a three part photography series which discusses the different…
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September 03, 2019
Last week, Action for M.E.’s Medical Advisor, Director of Operations and Project Coordinator for Scotland joined other stakeholders from the Scottish M.E. Coalition to meet with the…
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September 02, 2019
You may have heard of our annual project “Christmas Angels” which supports people with M.E. to
share Christmas cards with each other via our office. Some are very isolated, so these…
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August 30, 2019
School starts next week… where did summer go?! If you are a young person, or their parent/carer, and are worried about what challenges the new school year may bring – we can help.…
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August 28, 2019
Lia Pas is a Canadian artist who uses what she calls symptomatology embroidery to understand and explore her M.E./CFS. A condition invisible to those who do not live with it, Lia’s…
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August 23, 2019
Our fundraiser of the week is five year old Hope and her dad Robert. Earlier this month they took part in the Big Fun Run in Derby in order to raise money for our charity.When speaking…
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August 20, 2019
f your M.E./CFS makes showering difficult, you're not alone. When you have chronic illness, sometimes even just washing your hair can feel like you've run a marathon. If you struggle…
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August 16, 2019
Our fundraiser of the week is Melanie who is currently completing the Lands end to John O’ Groats cycle challenge. This route is the furthest possible distance in the British Isles…
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August 13, 2019
We are pleased to announce that Action for M.E. will be working with Oxford Brookes University to gather the experiences of children and young people with M.E. to develop a new guideline…
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August 12, 2019
Today's UN International Youth Day, with its theme of transforming education, highlights efforts to make education more relevant, equitable and inclusive for children and young people…
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August 09, 2019
Last Sunday's Prudential Ride London 100 saw six cyclists take on the 100-mile course in aid of Action for M.E. They completed the course alongside thousands of other ambitious cyclists…
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August 08, 2019
Today is Severe M.E. Understanding and Remembrance Day, a day to honour the one in four children and adults with M.E. who are most severely affected, house and/or bed bound, and frequently…
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August 07, 2019
The Action for M.E. team warmly invites you to join us at our 2019 AGM and conference, Are you listening to M.E.? Voices from Action for M.E.'s Big Survey.In the past three months,…
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August 02, 2019
Our Fundraiser of the week is the Thunderbolt Bristol who will be hosting a live music event on Thursday 8 August, 7.30pm – 11pm. The event includes performances from The Disorderlies,…
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July 30, 2019
It can be difficult to live with multiple chronic health conditions. This is why our medical advisor will be exploring what it is like to live with M.E. and Fibromyalgia in the next…
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July 26, 2019
Our fundraiser of the week is Alan Coates who has been fundraising for the last 10 years. In this time his efforts have raises an incredible £25,000 for various charities, including…
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July 25, 2019
Today has broken records for the hottest day of the year, with temperatures reaching as high as 39 degrees in London. As people with M.E. already report temperature sensitivities,…
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July 24, 2019
250,000 people in the UK live with M.E./CFS. Because the condition is an invisible illness, and the symptoms may not be immediately obvious to the outside observer, it can be difficult…
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July 23, 2019
The Department of Transport has changed the wording in their new Blue Badge guidance following pressure from Action for M.E. The guidance previously referred to hidden disabilities…
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July 23, 2019
What impact does M.E. have on your life? Does your GP really understand M.E.? What treatments help – or make your symptoms worse? If you have M.E./CFS, why not take our Big Survey…
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July 19, 2019
Since 1 May, we've been asking children and adults with M.E. to share their experience of diagnosis, symptom management, and support in school or at work, in our Big Survey.This data…
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July 19, 2019
"I was diagnosed with M.E. after being seriously ill with viral pneumonia, five years ago now. I was a full-time secondary school teacher at the time, Head of the Performing Arts and…
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July 18, 2019
Due to staff training and service improvement work, opening hours for our Information and Support Service are reduced over the coming week as follows:Friday 19 July - closedMonday 22…
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July 16, 2019
The Disability Benefits Consortium, of which Action for M.E. is a member, is launching a report today in the Houses of Parliament which highlights the devastating impact the changes…
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July 12, 2019
Our Fundraisers of the Week are our incredible Prudential Ride London 2019 team. Our riders have been training hard and will be taking on the challenging 100-mile course, made famous…
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July 10, 2019
What impact does M.E. have on your life? Does your GP really understand M.E.? What treatments help – or make your symptoms worse?Find out how thousands of men, women and children with…
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Registered in Scotland: SC040452.
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Our office is open Monday to Friday 9am to 5pm. Please call our Information and Support Officers on 0117 927 9551 or send an email. You can also contact each team by direct dial.
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