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 […]
Charity
GP Home Visits Under Threat
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, […]
The Legion Man
A Self-Help Guide To Managing Myalgic Encephalomyelitis
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 ?
Advocating For ME-ICC In Washington, DC
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
The Impact Of ME
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 !
#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today
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 !
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
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
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
VIDEO – Warning Over Illegal Behaviour As Flying Scotsman Visits York
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
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 ?
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
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
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
York TV Coverage Of York Inset Scooter Club Ride Out
The York Inset Scooter Club Rides Out In Support Of The York ME Community – Photos
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
London Marathon
The York Inset Scooter Club Ride Out In Support Of The York ME Community – Sunday 28 April 2019.
User-Led Advice Centre Set To Close Its Doors After NHS Funding Blow
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
Return On Investment II: David Tuller
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
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)
Extra Costs With A Disability
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
What Is ME ?
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 […]