Charity

UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park

Research Study

    From The Quadram Institute.   UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]

​GP Home Visits Under Threat

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    From Action For ME.   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. LMCs are the independent bodies who work with the British Medical Association to shape policy. If successful, […]

A Self-Help Guide To Managing Myalgic Encephalomyelitis

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    From ME Support.   Introduction I have had Myalgic Encephalomyelitis of varying degrees for the majority of my life, including periods of being housebound and bedridden. Conventional medicine offers us few options, and we’re faced with conflicting advice on living with M.E.; therefore, it’s difficult to know which way to turn. One thing […]

What Does ‘Listen To Your Body’ Mean When You Have M.E ?

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  From ME Action.   So I’ve been doing this fundraiser, where I try to get 1000 body weight reps done in half an hour every day to raise money for #meaction. It’s been a test for me in listening to my body, and knowing when to slow down, rest, or even skip a day. And it […]

Advocating For ME-ICC In Washington, DC

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    From ME Advocacy.   It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors […]

Invest In ME Research Newsletter – August 2019

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    Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   To read the Newsletter, click on the link below:   Link to Invest in ME Research Newsletter

The Impact Of ME

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  By Jenny in Scope.   Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The […]

Phoebe & Georgina’s Sponsored Kayak !

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    By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis.   Even a live Second World War grenade  couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

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  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

8 Years Doing It For ME !

Invest In ME

    If you have been with us from the start then please congratulate yourself on your part in changing the landscape of research and future treatment of ME in UK and beyond! Also please accept our massive thanks for your ongoing support to help the charity Invest in ME Research achieve so much. If you are […]

Invest In ME Research Newsletter July 2019

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Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME). More details of the charity are here.   Clinical trial at Quadram At the IIMEC14 international conference in London in May Professor Simon Carding from Quadram Institute announced the intention to conduct a clinical trial for ME in Norwich […]

ME/CFS Research: The First Quarter Of 2019 In Review

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  By Rochelle Joslyn (PhD) Edited by Allison Ramiller, in Solve ME/CFS Initiative.   2019 is off to a strong start for ME/CFS research! From the search for sensitive and specific biomarkers in neuroimaging and CPET testing, to the use of next generation (RNA) sequencing in transcriptomic analyses of peripheral blood, findings from the first […]

Action For ME Survey

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        Hi everyone. I’ve received the following from Action for ME and pass it on should you wish to take part: Hello I am getting in touch to introduce myself as Action for M.E.’s Policy and Engagement Officer. A large part of my role is engaging with politicians to improve services and […]

VIDEO – Warning Over Illegal Behaviour As Flying Scotsman Visits York

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  From Minster FM. The iconic steam engine Flying Scotsman will be visiting North Yorkshire this weekend but those who are going to see it are urged to do so safely. This Saturday, the 29th June, the steam engine will travel up the Midland Main Line before heading to York. Enthusiasts are expected to be […]

ME Association May Summary of ME/CFS Published Research – 19 June 2019

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  By Charlotte Stephens, Research Correspondent, ME Association. The Index of Published ME/CFS Research has now been updated to take account of the research that has been published during the month of May 2019. It’s a little later than normal due to ME-related absence. The Index is a useful way to locate and then read all relevant research […]

What Is The NKS ?

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    NKS stands for ‘THE NATIONAL KEY SCHEME’! As the name suggests, located all around Britain, there are over 10,000 accessible toilets for disabled people, in public as well as commercial properties of all sorts, which are part of the scheme. The scheme also includes over 1000 Changing Places toilets, which have added specialist […]

Welcome To The June 2019 News Update For York Carers Centre

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York Carers Centre news Thank You Volunteers It’s National Volunteers Week and we’d like to say a huge thank you to all of our committed volunteers, who generously offer their skills and time to help carers in York. From the board of trustees and office volunteers to those who help carers at groups across the […]

York Charity Receives £40,000 In Lottery Funding

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  From Minster FM News.   Many more people in York will be able to receive vital support and help, after a local charity received lottery funding. York Neighbours, which provides practical help and support to people aged over 65, has received £40,000 a year for the next three years allowing it to expand its […]

Telford Cyclist Takes On Epic Race To Help Teen With ME

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    From The Shropshire Star.   A cyclist will take on a challenging 100-mile race through woodlands in support of a bed bound 16-year-old with chronic fatigue. Kind-hearted Arry West, who is 44, will get on his bike for the epic Mountain Mayhem challenge on June 22 and 23 in aid of research into […]

York TV Coverage Of York Inset Scooter Club Ride Out

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  Below is a link to the coverage by York TV of The York Inset Scooter Club Ride Out on behalf of The York ME Community. I can’t say enough about how much this could change the lives of the many people in York with ME who are unaware of support in the area.  The […]

The York Inset Scooter Club Rides Out In Support Of The York ME Community – Photos

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  A brilliant morning watching the gathering of over 200 motorbikes and scooters of The York Inset Scooter Club set off from Clifford’s Tower in York on their Charity Ride Out on behalf of The York ME Community. They were seen off by the Mayor of York, the York Normandy Veterans, as well as members […]

Normandy Veterans Who Never Ran Out Of Steam

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      From The Yorkshire Post.   Not many survivors of the events in France 75 years ago remain, but two of them – three if you include the train they were on – enjoyed a day out in Yorkshire today. With so few members left, the Normandy Veterans’ Association has officially disbanded, but […]

The York Inset Scooter Club Ride Out In Support Of The York ME Community – Sunday 28 April 2019.

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  THE YORK INSET SCOOTER CLUB RIDE OUT IN SUPPORT OF THE YORK ME COMMUNITY – SUNDAY 28 APRIL 2019.   They will head off from The York Eye (Clifford’s Tower) set off by the Mayor of York and the York Normandy Veterans. They aim to depart at 10.30 am. Come and wave them off […]

User-Led Advice Centre Set To Close Its Doors After NHS Funding Blow

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  By John Pring in Disability News Service.   A disabled people’s organisation is set to have to close the doors of its advice centre, which has provided vital support with benefit claims to thousands of disabled people, after nearly all its funding was suddenly withdrawn by a local NHS body. Possability People has been running […]

Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder

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    By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]

Return On Investment II: David Tuller

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By Jennie Spotila in Occupy M.E.   Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]

IIMEC14 – The Anne Örtegren Memorial Lecture 2019

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    From Invest in ME Research.   IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend.   Anne Örtegren passed away in January 2018. […]

Mike’s EU Marathons- Cyprus (17.03.19)

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  By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019.  Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]

Extra Costs With A Disability

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  From Scope.   Life costs more for disabled people and their families. Spending more on essential goods and services like; heating, insurance, equipment and therapies. These extra costs mean disabled people have less money in their pocket than non-disabled people, or simply go without. Therefore, disabled people are likely to have a lower standard […]

Mike Harley’s Marathons For ME

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  Good luck to Mike Harley who is running 28 Marathons across Europe to raise Awareness and funds for Invest In ME Research.   On Sunday the 17th of March he will be running the Cyprus Marathon.   As always, a huge thanks from everyone in The York ME Community  Mike ! See the tab […]

What Is ME ?

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  From #MEAction.   Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million […]

Life Of Pippa, Spoonie Survival Kits…..And So Much More !

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  Hi Everyone. ‘My name is Pippa, and I’m a chronically ill writer and blogger at Life Of Pippa. I’m originally from Sheffield, but moved to York for university and have been here ever since! I’ve had ME/CFS since I was a teenager, but was only diagnosed in 2014, following a relapse at the age of […]

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