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Products to help when showering feels like running a marathon

August 20, 2019

If 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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Fundraiser of the week - Melanie Claxton

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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Calling all knitters – we need your help!

August 15, 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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Involving young people in the NICE guideline development

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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International Youth Day: support Hannah's petition

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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Fundraisers of the week: our Ride London 2019 team

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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Today is Severe M.E. Understanding and Remembrance Day

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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Voices from our Big Survey: book your conference place

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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Fundraiser of the week - Thunderbolt Bristol

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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Do you have M.E. and Fibromyalgia?

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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Fundraiser of the week - Alan Coates

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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Managing your M.E./CFS on the hottest day of the year

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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Drawing invisible illnesses

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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​Campaign success – Blue Badge Guidance improved

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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Take our survey, share your experiences

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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Two weeks left to take our Big Survey

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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Fundraiser of the week: Joanne Watkinson

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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Info and support opening hours: today to Mon 29 July

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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New report launched on the impact of welfare changes

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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Our fundraisers of the week - Ride London 2019

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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Save the date: Action for M.E.'s 2019 AGM and conference

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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Fundraisers of the week - Clive and Chrissie

July 05, 2019

Our fundraisers of the week are Chrissie and Clive Shaw who took part in the National Open Garden Scheme this year. This scheme gave the public unique access to over 3500 exceptional…
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​Office closure on Thursday 4 July

July 03, 2019

Our offices and phone lines will not be open tomorrow as our staff will be attending a board meeting. Normal office hours will resume on Friday 5 July, with an exception to our Information…
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Fundraiser of the week - Nicola's skydive

June 28, 2019

Our fundraiser of the week is Nicola, who has completed a sponsored skydive on behalf of our charity. So far her fundraiser has managed to raise us an incredible £551.When speaking…
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How can you can support your students with M.E./CFS?

June 26, 2019

Zoe Galbraith, 20, is a music student at the Royal Conservatoire of Scotland (RCS), a world-leading performance arts school in Glasgow. Zoe developed M.E. at 16, just as she was preparing…
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Fundraiser of the week - Gemma and her dog Walter

June 21, 2019

Our fundraisers of the week are Gemma and her little dachshund sidekick Walter who will be taking part in Manchester’s annual 5K Dog Jog in order to raise money and awareness for our…
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How can I get connected this Loneliness Awareness Week?

June 20, 2019

Loneliness can affect anyone regardless of who they are. However, some people are more vulnerable to these feelings than others. Preliminary results from our Big Survey on living with…
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Tools to help you talk about your M.E./CFS

June 19, 2019

Whether you’ve been newly diagnosed or have been living with M.E. for some time, telling friends, family, children and colleagues about your condition can feel like a daunting task.…
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Happy Birthday Miyah - Our fundraiser of the week

June 14, 2019

Our fundraiser of the week is Miyah who is 10 today.Miyah is a carer for her mom, who has M.E./CFS. She is a passionate advocate for the M.E. community and her mom Laura tells us that: "She…
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Carers week - Graham's story

June 14, 2019

Graham cares for his wife, Carina, who has M.E./CFS. In this article he speaks about what it is like caring for a loved one and what support there is for carers. I don't really think…
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​Walk with M.E. 2019 – conclusions and successes.

June 13, 2019

Last month, Walk with M.E., Action for M.E.’s sponsored walk with a twist came to an end. This campaign was a sponsored walk where everything was done as a team. This meant anyone…
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Meet M.E. - our drop in event in Inverness

June 12, 2019

Last Saturday, Action for M.E. hosted Meet M.E in partnership with The Oxygen Works and M.E. Highland and Islands in Inverness. Meet M.E. was a free, informal, drop-in event for…
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​What support is available for carers in the UK?

June 11, 2019

The theme of Carers Week 2019 is ‘Getting Carers Connected.’ We’ve put together some information on the different types of support that you are entitled to as a carer. Have you had…
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Craig's story - "More could be done for carers"

June 10, 2019

Craig has M.E./CFS and is cared for by his family. In this article he writes about his experiences with his condition, the struggles that he has faced and the support that his family…
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How digital art has made painting accessible for Mathilde Vhargon

June 07, 2019

Mathilde Vhargon is an artist who has M.E./CFS. As a person with M.E., digital painting software makes it possible for her to create abstract and abstract realist paintings in a way…
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Fundraisers of the week - Liz and Helen

June 06, 2019

Our Fundraisers of the week are sisters Helen and Liz who have been involved with our charity for over 27 years. Helen has M.E. and the two have held auctions from their home, stalls…
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Information support and welfare benefits service temporary closure

June 06, 2019

Action for M.E.’s Information and Support Service will be closed from Thursday 6 June. Due to staff sickness affecting capacity, we have taken the difficult decision to close our Information…
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​To all of our dedicated volunteers – thank you.

June 03, 2019

This week is Volunteers Week and we would like to use this as an opportunity to celebrate and say thank you for the invaluable contribution you make. Some of our fantastic volunteers…
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What your support has achieved this M.E. awareness month

May 31, 2019

This M.E. Awareness Month, your stories and experiences have raised awareness, and moved and inspired people to reach out for information and support – and to ask how they can help.…
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​Scottish Petitions Committee discussion on M.E./CFS

May 30, 2019

Earlier this morning the Scottish Petitions Committee responded to a petition put forward to them asking for them to "review treatment of people with M.E." "I was very struck by the…
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Office closure on Monday 27 May

May 24, 2019

Our offices and phone lines will not be open on Monday 27 May as it is a Bank Holiday. Normal office hours will resume on Tuesday 28 May.If you need information and support whilst we…
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Fundraiser of the week - Jo in honour of Meg

May 24, 2019

Our fundraiser of the week is Jo who will be completing the Jurassic Coast Challenge on June 8. She is doing this on behalf of her best friend Megan who is living with severe M.E. When…
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#AreYouMissingMe? - Alice's story

May 24, 2019

Alice is 14 years old and tells us what it’s like to live with M.E. I’ve been missing from society for three years and seven months. I have many different ailments to cope with that…
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"Great misery has been inflicted" says UN reporter

May 23, 2019

“Great misery has been inflicted unnecessarily, especially on the working poor, on single mothers struggling against mighty odds, on people with disabilities who are already marginalized,”…
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Man with M.E. - #AreYouMissingMen?

May 22, 2019

Until I was struck down with M.E., I’d always assumed – on the very rare occasions I thought about it – that the disease was more or less exclusive to women. My passive experience in…
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#AreYouMissingMen?

May 22, 2019

M.E. is a largely misunderstood and unrecognised illness, not only nationally but also globally. As a result, it is easy to see how isolation and ignorance become common themes experienced…
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'How can I help?' - our new resources for teachers

May 20, 2019

“It was a weight off me when I finally got an answer from the doctor. I could see that people with things like dyslexia got one-to-one support, so why not me? But I was academically…
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Social media takeover with Rose

May 17, 2019

As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Rose - a person with severe M.E. She spent the day posting about isolation, her life…
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Fundraiser of the week - Anne Roche

May 17, 2019

Our fundraiser of the week is Anne Roche who will be hosting a family fun day in Newton-Aycliffe this Saturday (May 18) 12pm – 5pm. The day will host many fun activities such as…
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​Are you missing M.E.? Jo's story

May 16, 2019

The Two Faces of ME - Payback"My name is Jo Moss, I’m 44 years old, I live in Norwich (UK) and I have been missing for 13+ years."As I have mentioned in previous blogs, M.E. patients…
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M.E. awareness month - what we've achieved so far and what's next

May 15, 2019

Today marks the halfway point for M.E. awareness month and thanks to the hard work of campaigners, charities and media publications alike, so much has been achieved. So far our organisation…
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Fundraiser of the week - Rebecca Almodovar

May 10, 2019

Our fundraiser of the week is Rebecca (pictured) who took part in the Paris Marathon 2019 on behalf of our charity. When speaking about her motivations for taking part in the marathon,…
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Are you missing M.E.? - Naomi's story

May 10, 2019

Hi, my name is Naomi and I have a condition called M.E. Before I became ill, I was at university studying nursing. Then I started to experience more symptoms and would get frustrated…
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Meet M.E. drop-in day, Inverness: book your free place

May 09, 2019

Meet M.E. is a free, informal, drop-in event for people with M.E., carers, family and friends, hosted by Action for M.E., M.E. Highlands and Islands Network and The Oxygen Works, on…
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A day in the life of Ev

May 09, 2019

As part of our M.E. awareness month campaign, Action for M.E. handed over our social media pages to Ev - a person with M.E. She spent the day posting about her condition, experiences…
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Fundraiser of the week - Miyah

May 07, 2019

Our fundraiser of the week is nine year old Miyah, who is having her hair cut to raise money and awareness for M.E./CFS. By doing this she wants to “help towards finding a cure as very…
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Social media takeover with Evan

May 03, 2019

As part of M.E. awareness month we will be having our first ever social media takeover by a person with M.E.! What does this mean? On Wednesday 8 May, Action for M.E. will hand over…
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Action for M.E.'s 'Big survey'

May 02, 2019

We're undertaking a five-year follow up to our last major survey of people living with M.E. in the UK, asking children and adults about their experiences of health, education, employment,…
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Are you missing M.E.? - Martin's story

May 01, 2019

I was diagnosed in April 2018 after forcing my GP to correctly diagnose me. However I believe I have had M.E since I was 18/19 years old. Over the last three years it has become severe…
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May is M.E. Awareness Month

May 01, 2019

For M.E. Awareness Month 2019, we are asking professionals, planners and policy-makers: "Are you missing M.E.?"Many children and adults with M.E. tell us they feel missed out, and left…
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Changes to our Information and Support and Welfare services

April 30, 2019

Action for M.E. offers a free Information and Support Service for children, young people and adults with M.E., and their carers and family members. In the past, this service has…
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Walk with M.E. - Paige's Story

April 29, 2019

This year’s Walk with M.E. team challenge has been a massive success so far. There are only two weeks left of the challenge and many of our teams have done a fantastic job at counting…
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Millions Missing Bristol 2019 - 11 May

April 25, 2019

Are you ready for Millions Missing? This is a global demonstration created by ME Action that calls for health equality for M.E. This will take place throughout M.E. awareness week (6…
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Work Capability Assessment debate -"It's the system that is flawed”

April 25, 2019

“The evidence is there, it is the system that is flawed” A spotlight was shone on the issues with the DWP’s Work Capability Assessment on Wednesday 24 April in a Westminster Hall…
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Our staff Walk with M.E. team – in honour of the SAMS

April 23, 2019

As part of Walk with M.E. 2019, ten members of Action for M.E.’s staff are taking part. In preparation for the campaign, we all had many ideas about how we would make our team special.Our…
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Fundraisers of the week - London Marathon 2019 Runners

April 18, 2019

Our fundraisers of the week are our London Marathon runners who will be taking part in the event on 28 April. They have been doing an amazing job preparing for the race, practising…
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Office closure for Easter Bank Holidays 19 and 22 April 2019

April 18, 2019

Our offices and phone lines will be closed on Friday 19 and Monday 22 April for Easter. Normal officer hours will resume on Tuesday 23 April. If you need information and support whilst…
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Our welfare benefits adviser highlights issues of WCA

April 17, 2019

Our specialist welfare advisor, Sophie Knight, has advised a number of people on work capability assessments (WCA) and we are using her expertise to send Laura Pidcock MP, Shadow Minister…
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Our fundraiser of the week - Martyn

April 12, 2019

"I know what you are thinking – ‘in the pictures I see of Kerrie, she looks good...’ Well yes, do you think I would take photos of my wife on a normal day on the sofa in her pyjamas…
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Information and welfare benefits: our services

April 10, 2019

Action for M.E. offers a free Information and Support Service for children, young people and adults with M.E., and their carers and family members.In the past, this service has included…
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Action for M.E.'s response to the Ofsted Consulation

April 08, 2019

Action for M.E. have responded Ofsted's consultation regarding their proposed changes to the education inspection framework. This framework instructs inspectors on the areas of scrutiny…
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Fundraiser of the week - Charles Vaughan-jones

April 05, 2019

Our Fundraiser of the week is Charles Vaughan-jones who will be hosting a Pub Quiz at The Dragon Hotel in Montgomery, Wales. The event will be taking place on April 11. When speaking…
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Our new regional advocacy service: what you need to know

April 04, 2019

Our free regional advocacy service has launched today and supports adults (age 18 and over) living with M.E. in the Midlands and South West. Advocacy is a process that helps individuals…
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Results of the Forward ME survey for CBT and GET

April 03, 2019

We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward ME. All the raw data was analysed and inserted into a comprehensive report by…
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Office closure - Monday 1 and Tuesday 2 April 2019

March 29, 2019

Our offices and phone lines will be closed on Monday 1 and Tuesday 2 April due to staff training. While we are away, you can still access information and support from us in other ways:Our…
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Fundraisers of the week - Holly's Team

March 27, 2019

Our Fundraisers of the week are Holly's team, who are taking part in Walk with M.E. They have just reached their team goal of one million steps!When speaking about her reasons for taking…
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Become a volunteer advocate

March 25, 2019

Are you passionate about helping people affected by M.E.? Are you responsible, empathetic, good at listening and a clear communicator? Do you live in the South West or Midlands? Could…
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InterAction feature - 'M.E. in the workplace Q&A'

March 25, 2019

M.E. can have an impact on your career and ability to carry out your job. Many people have to reduce their hours, or leave work altogether due to their condition. Have you felt discriminated…
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M.E. in Sunday Times: "I've been made to feel a burden"

March 24, 2019

Responding to the hundreds of comments it received following Rod Liddle's comment piece on M.E. last weekend, the Sunday Times has published an article highlighting the reality of M.E.…
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Bath Half Marathon 2019 - Thank you

March 21, 2019

Last Sunday, 12000 runners and 40000 spectators attended the Bath Half Marathon 2019.Amongst them were Catherine, Natty, Joe, Tom (pictured), Alex, Melissa and Daniel who were running…
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Fundraiser of the week - Sally

March 21, 2019

We'd like to thank Sally, our fundraiser of the week for raising money and awareness towards M.E. and our charity.She did this by generously asking her friends to donate to her birthday…
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Medication law changes to pregabalin and gabapentin

March 21, 2019

If you have been prescribed pregabalin (Alzain or Lyrica) and gabapentin (Neurontin), it is important to be aware that the government will be changing their medication laws from 1 April…
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​Walk with M.E. – Bethan’s story

March 20, 2019

Our Walk with M.E. campaign has now been going on for over a month and a half. During this time, our teams have been working hard to reach their collective goal – one million steps.…
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#ShareGoodScience in response to The Sunday Times

March 18, 2019

A number of you have contacted us about the awful story by Rod Liddle in yesterday’s Sunday Times. Given the stiff competition to get a response published in the paper itself, we have…
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Fundraiser of the week - Nick West

March 15, 2019

Our fundraiser of the week has quite a unique story. Nick West has been a collector for over 42 years and has amassed a collection of over 9300 different British beer cans. His hobby…
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Patients and researchers moving M.E. research forward

March 14, 2019

Yesterday, you may have seen a story published by an international news agency about some M.E. researchers facing online abuse and harassment. We cannot condone any behaviour that…
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Fundraiser of the week: Alice, in honour of Katie

March 08, 2019

Another inspirational woman is our fundraiser of the week, Alice, who will be running the London Marathon in April. She will be running the event in honour of her best friend Katie…
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M.E. inspiration on International Women's Day

March 08, 2019

International Women’s Day celebrates women all over the world and the amazing work they have done. Whether they are politicians, doctors, campaigners, carers, friends, or family members,…
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Aged up to 19 and living with M.E.? Join our new forum

March 07, 2019

Young people with M.E. have told us that the lack of awareness and understanding of their condition makes them feel very lonely. For those unable to leave their homes because of the…
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Commons M.E. debate discussed on BBC Radio Bristol

March 07, 2019

BBC Radio Bristol’s John Darvall will highlight M.E. and its impact on his programme this morning. Following an interview with Liz, a local woman living with M.E., John will speak…
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Educate M.E. reflection and development meeting

March 05, 2019

Action for M.E. hosted a reflection and development meeting on 23 February as part of Educate M.E. - a one year project set up to develop and deliver awareness raising sessions in secondary…
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Fundraiser of the week - Oliver Vaughan-Jone

February 28, 2019

Our fundraiser of the week is Oliver Vaughan-Jones, an artist in Wales."I started to paint again as a way to cope with the pain and disorientation arising from a debilitating neurological…
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Combating isolation - our new young people's forum

February 27, 2019

Research has found that M.E. causes an enormous loss of independence and self-esteem. Our young people’s community combats the isolation and social exclusion faced by many young people…
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M.E./CFS in Parliament: more written questions

February 26, 2019

We are pleased to see that there has been increased engagement from Members of Parliament surrounding M.E./CFS. Following last month’s M.E. debate there has been nine written questions…
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Have you received good or poor care?

February 20, 2019

The Care Quality Commission (CQC) is asking people who have experienced good or poor care to let them know by completing an online form anonymously. They are seeking views of a wide…
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Department of Transport Blue Badge eligibility workshop

February 18, 2019

Action for M.E. has attended a workshop with representatives from the Department of Transport to discuss changes to the Blue Badge eligibility guidance. In 2018 the Government announced…
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​Latest research: Onset patterns and more

February 15, 2019

Supporting you to stay informed about M.E. research, we aim to publish regular round-ups of papers published in peer-reviewed journals. Please note this is not an exhaustive list…
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NICE guideline review: for children and young people

February 14, 2019

The National Institute for Clinical Excellence (NICE) are reviewing their guidance titled, “children and young people with disabilities and severe complex needs: integrated health and…
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Scottish National Action Plan consultation - our response

February 13, 2019

Action for M.E. has submitted a response to the Scottish Government’s consultation on the National Action Plan on Neurological Conditions. Our response highlights several areas of concern…
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Fundraiser of the week - Bron's Vegan Brownies

February 08, 2019

Our fundraiser of the week is Bron’s Vegan Brownies – an independent business set up by 18 year old Bron. When speaking about her daughter’s business Elaine, her mother, says: “Super…
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