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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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 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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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February 08, 2019
Teachers in South Ayrshire have been learning about the impact of M.E. and how to support young people with the condition, thanks to Action for M.E.’s Educate M.E. project in Scotland.…
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February 07, 2019
Sir Jonathan Montgomery, Chair of the Health Research Authority, has written to the Science and Technology Select Committee to say that the HRA has “no regulatory concerns about the…
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February 06, 2019
In the spring issue, our Medical Advisor Dr Gregor Purdie will be taking a look at sleep disturbances. These are common for people with M.E. and/or CFS and can include unrefreshing…
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February 01, 2019
Exciting news! Today is the official launch of Walk with M.E. 2019 and it’s already looking to be our biggest year yet. We'd like to celebrate the launch by making all of our walkers…
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January 30, 2019
Are you born on or before 5 November 1953? You may be entitled to a Winter Fuel payment. What is it? A Winter Fuel payment is a one-off, tax-free payment of between £100 and £300…
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January 30, 2019
Thursday 24 January was a busy day for the M.E. community with debates being held in both UK and Scottish Parliament.
The Scottish Petitions Committee was attended by Scotland’s Chief…
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January 28, 2019
Minutes from January’s meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read. This gives updates on:Medical Research Council Strategy Board – a paper…
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January 25, 2019
Action for M.E.’s Information and Support Service will be closed for one week from Monday 27 January to Friday 1 February. Due to staff sickness affecting capacity, and considerably…
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January 25, 2019
"It’s actually quite remarkable to consider how little is being sent on research, it's something like 0.02% of all active grants given by mainstream funding agencies going to support…
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January 24, 2019
Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, will lead a House of Commons debate on M.E. at 2pm today.This follows her Westminster Hall debate in June on research…
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January 21, 2019
The winter issue of our membership magazine, InterAction, is now available to stream or download in audio format via Soundcloud.This edition of InterAction is special as it is the 100th…
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January 18, 2019
Action for M.E. wants all children living with M.E./CFS to get the support they need in school. We need to make sure we are focusing on the issues that matter most to families affected.…
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January 17, 2019
Carol Monaghan MP, Member of the UK Parliament for Glasgow North West, has confirmed that the Backbench Business Committee has agreed to a debate on M.E. taking place next Thursday.Following…
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January 16, 2019
The Scottish Government has published a draft National Action Plan on Neurological Conditions. It sets out the vision of improving diagnosis, treatment and care of people with neurological…
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January 15, 2019
Action for M.E. has been working with 16-year-old Maddie, who lives in Hayle, Cornwall, where the Local Government and Social Care Ombudsman (LGO) has made a ruling against the Council…
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January 11, 2019
We’d like to say thank you to the Edge Hill University Marvel Society, who have chosen to raise money and awareness for our charity. They will be hosting an event on the 22 January…
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January 11, 2019
Forward M.E. has launched a survey to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT).The National Institute of Health and Care…
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January 09, 2019
Whoever you are, wherever you are, help us Walk with M.E. Walk with M.E. is a sponsored walk with a twist: everything is done as a team. This means you can take part if you
would like…
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January 07, 2019
A range of people from the Department for Work and Pensions had the opportunity to learn more about M.E. and its impact on claimants, in a training session led by Action for M.E. just…
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January 04, 2019
We’d like to say thank you to our fundraiser of the week Alice who will be running the London Marathon in 2019 in memory of her best friend Katie, who passed away in 2015.“The charity…
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January 01, 2019
Now that 2018 has come to an end here are some of the things that we have achieved over the last year: However, there is so much more that we want to do. Here are our new year’s…
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December 28, 2018
We'd like to say thank you to our fundraiser of the week Emily Price, a singer who has been raising money for our charity by selling CDs.The album is inspired by Christmas and features…
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December 21, 2018
Our fundraiser of the week is 11-year-old Rebecca who has been raising money for our charity by selling handmade jewellery. Diagnosed with M.E. two years ago, Rebecca has done amazingly…
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December 18, 2018
In October, the House of Commons’ Science and Technology Committee asked the public to inform them on potential areas of scrutiny. The committee expressed an interest to hear suggestions…
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December 17, 2018
Are you aged 13 to 23 and living with M.E./CFS in Scotland? We want to hear from you! Schools can struggle to get it right for children and young people with M.E. Although M.E. is the…
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December 12, 2018
Action for M.E. have partnered with the ME Highland and Islands Network (ME Highlands) in order to reach more people with M.E. in Scotland. ME Highlands works to highlight the lack…
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December 06, 2018
Action for M.E. offers a free Information and Support Service for young people and adults with M.E., and their carers and family. Our friendly Information and Support team understand…
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December 04, 2018
A short written report from last month's meeting of the Board of the UK CFS/M.E. Collaborative (CMRC) are now available to read on our CMRC page, giving updates on:the CMRC's priority-setting…
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December 04, 2018
The International Alliance for Myalgic Encephalomyelitis (IAFME) has produced a trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). Recognition, research and…
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November 30, 2018
"The most important feature of Forward M.E. is that we work together for the common good; never was the principle of 'divide and rule' more prevalent than in the word of M.E." said…
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November 26, 2018
The Big Give Christmas Challenge will be starting at noon tomorrow, and will run until midday on Tuesday the 4 December. Throughout this week any donation made to us through the Big…
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November 23, 2018
This week’s fundraiser of the week is everyone who has pledged to donate to us during the Big Give Christmas Challenge that starts at noon next Tuesday.
In particular, we would like…
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November 20, 2018
Action for M.E. are testing out an idea we have for a new project that could potentially help support people with M.E. nationwide.This project would aim to link healthy volunteers with…
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November 20, 2018
From noon today, the office phone-lines will be temporarily down as we undergo essential maintenance to our phone system. These improvements will mean that we are better able to provide…
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November 16, 2018
Action for M.E. would like to say a huge thank you to our fundraisers of the week- the Bowls Cornwall club- for raising £1,200 on behalf of our charity.
Peter Prynne presented a check…
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November 15, 2018
Can you help us?
Action for M.E. are looking for volunteers to help us raise critical funds and awareness to support the 250,000 children, young people and adults living with M.E.…
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November 13, 2018
Action for M.E. welcome the appointment of Dr William Weir to the National Institute for Health and Care Excellence (NICE) guideline development committee. Dr Weir is currently the…
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November 12, 2018
We are pleased to announce that our Welfare Advice and Support Service has re-opened, following a period of temporary closure. Please call our Information and Support line on 0117…
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November 08, 2018
All of us at Action for M.E. would like to say a huge thank you to Peter Wharton, Alistair and Pete Hughs, who formed our small, but amazing 2018 Prudential RideLondon – Surrey 100…
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November 07, 2018
Trigger warning: this post
features content of a sensitive nature regarding suicide. Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for…
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Registered in Scotland: SC040452.
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