Welcome To The York ME Community

Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.

Cyclist Sets New Speed Record – Then Celebrates In A York Pub


  From YorkMix.   A 42-year-old architect became the fastest cyclist in Europe – then celebrated with a pint in a York pub. Neil Campbell set a new European cycling speed record by riding at 135.3mph, using an innovative technique in which his bike was initially attached to a car. He became the continent’s speediest man […]

The State Of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Research In 2018

Scientist using a microscope

  By James Moore in Patient Worthy.   Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) has been a controversial condition ever since it was first diagnosed and recognized. Some uninformed doctors still believe that the syndrome is a psychological phenomenon. Meanwhile, the cause of ME/CFS is still not well understood. Some caregivers still recommend treatments for patients, […]

Trial By Error: Sir Simon Scores An Own Goal

David Tuller

  By David Tuller, DrPH.   From the start, one of my strategies for this PACE-debunking project was to draw in outside experts–people with no ax to grind and no pre-conceived notions about the trial and its methodology–and encourage them to scrutinize the matter. It was telling that many well-regarded scientists and researchers were willing […]

Minister For Disabled People Caught Misleading MPs On Cuts To Support… Again

Sarah Newton MP

  By John Pring in Disability News Service.   The minister for disabled people has been caught misleading MPs – again – as she tried to defend her government’s repeated breaches of the UN disability convention. It was the second time in five months that Sarah Newton (pictured) has misled MPs in a House of […]

Activated Charcoal Doesn’t Detox The Body – Four Reasons You Should Avoid It


  By Sophie Medlin in The Conversation.   On her Goop website, Gwyneth Paltrow claimed that charcoal lemonade was one of the “best juice cleansers”. That was in 2014. Today, charcoal products – from croissants to capsules – are everywhere. Even high street coffee chains have taken to selling charcoal “shots”. Some vendors of these products claim that […]

Boost For People With ME And Chronic Fatigue Syndrome Thanks To Parliament (Australia)


    By Sasha Nimmo in ME Australia. (Written prior to May 12th, but of interest nonetheless) The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field. Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf […]

Justice, Finally, For Stricken Washington Post Reporter

Brian Vastag

  By David Beard in Poynter.   He worked for the richest man in the world. He was an energetic hiker and lover of the outdoors — and a hard-charging science writer for The Washington Post (where we worked together). In 2012, Brian Vastag was felled by a fever. He’s never recovered. The science reporter […]

Centre Of Excellence For ME


  This page is for the researchers funded by IiMER to communicate what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with patients and the public. We hope this will help more people understand ME and the possibilities and […]

Atos And Capita Win PIP Contract Extension ‘Because DWP Is Chained To A Corpse’


From Disabled Go News.   The government’s decision to extend the contracts of two discredited companies that carry out disability benefit assessments has been branded “appalling”, “shocking” and “a complete con”. The move has also been criticised by the Scottish government. Sarah Newton, the minister for disabled people, told MPs in a written statement this week that […]

Scrapping Clifford’s Tower Centre Is A ‘Win-Win’ – Says The Man Who Led The Fight

Clifford's Tower

  From YorkMix.   The man who almost singlehandedly stopped English Heritage building a modern visitor centre into the motte of Clifford’s Tower has said he is “stunned” by the decision. It was independent Cllr Johnny Hayes who led the fight against the project, after City of York Council had granted planning permission. He raised […]

Humans Of ME/CFS


  By Kathleen S. in Solve ME/CFS Initiative.   I was diagnosed with ME/CFS in 1995 after 3 years of being told I was overworking, over playing or stressed. I was advised to apply for disability by my Doctor and was handed disability on a silver platter by the state of North Carolina. Being one […]

Struggling to Accept the Days When Illness Keeps Me From Doing Anything


    By Sally Rudderty in The Mighty.   I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome


  From the NINDS Common Data Elements site.   The National Institute of Neurological Disorders and Stroke (NINDS) and other Federal agencies and international organizations have the common mission of developing data standards for clinical research. Through the efforts of subject-specific working groups, topic-driven data elements have been created. The first set of Common Data Elements […]

“Listened To But Were We Heard ?” The NICE Guidelines Scoping Workshop


  From #MEAction.   On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended […]

DWP Should Think Again On ESA Back Payments And Offer Compensation

DWP Caxton House

  From My Disability Matters.   The Department for Work and Pensions (DWP) should reconsider its decision to offer only a partial backpayment of the money owed to 70,000 disabled people who for years were not receiving the correct level of out-of-work benefits, MPs have heard. One Conservative member of the public accounts committee, Anne […]

Application In Parliament For Debate On ME


  Below is a link to an application put forward today in Parliament to have ME debated in the main chamber.   This was put forward by Carol Monaghan MP, and supported by York MP’s, Julian Sturdy and Rachael Maskell.     Link to Parliamentary Application

What Lies Beneath England’s Allegiances And Rivalries ?


  By Mark Easton in BBC News.   Beneath the veneer of national identity, England is an elaborate tapestry of allegiances and rivalries. For centuries, bureaucrats have drawn lines on the map without understanding the invisible ley lines of belonging that criss-cross the English countryside. There are deep loyalties to ancient counties, proud cities and […]

Public Meeting On Flood Defences In Fulford


  A public meeting will be held next week for local residents to hear more about the plans for flood defences in Fulford. This follows on from a successful campaign led by Liberal Democrat ward councillor, Cllr Keith Aspden, and local residents, which secured a total of £500,000 to be spent on additional flood defences […]

Judges Just Forced The DWP To Review The Benefit Claims Of Countless Disabled People

Disability Dice

  By Steve Topple in The Canary.   A panel of judges has backed the Department for Work and Pensions (DWP) into a corner. So much so that it’s being forced to review the benefit claims of countless disabled people. Another defeat for the DWP On Wednesday 30 May, the legal firm Garden Court North […]

Why Attributing ‘Type A’ Personalities to Myalgic Encephalomyelitis Needs to Stop

Type A

  By Christina Baltais in The Mighty.   I recently had an experience with a relative that caught me off guard. In passing, she mentioned reading somewhere that it’s mostly “type A” individuals who develop ME (myalgic encephalomyelitis). This was followed by a pause and accusatory glance – that felt more like a guilty verdict than a […]

York To Celebrate Independents Day – Showcasing The City’s Brilliant Indie Businesses


  From YorkMix.   York’s independent businesses are doing some amazing things – and they’re ready to shout about it. The second AGM of York Independent Business Association – better known as Indie York – heard about some exciting plans for the future. Chairman Johnny Hayes said Indie York already had more than 180 members, […]

Deconstructing Post-Exertional Malaise In Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Patient-Centered, Cross-Sectional Survey


  By Lily Chu, Ian J. Valencia, Donn W. Garvert and Jose G. Montoya in PLOS One.   Abstract Background Post-exertional malaise (PEM) is considered to be the hallmark characteristic of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Yet, patients have rarely been asked in formal studies to describe their experience of PEM. Objectives To describe symptoms associated with and […]

UK’s ‘Most Accessible Region’ For Disabled Drivers Revealed

Disability Parking

  By Joe Peskett in Access & Mobility Professionals.   Edinburgh has been named as the most accessible region in the UK for disabled motorists when it comes to refuelling at petrol stations, according to new figures produced by an assistive tech firm. The city district has, per head, the highest number of petrol stations […]

A Plan To Replicate Mark Davis’s Remarkable Findings Of Immune Activation In ME/CFS


  By Simon McGrath in ME/CFS Research Review.   A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS. Last year, Davis […]

Trial By Error: My 2011 NY Times Exchange With the PACE PIs

David Tuller

  By David Tuller, DrPH.   When the PACE trial was published in early 2011, my New York Times editor sent it to me, along with the press release. As a non-staff contributor to the Times, I had started covering the debate over the mouse retrovirus hypothesis and science, but I’d heard nothing about anything called PACE or […]

People With M.E. Must Be Heard, Says NICE Committee


  From Action For ME News.   Action for M.E. joined stakeholders from patient groups, charities, and professional bodies to take part in Friday’s workshop on the scope of the National Institute of Health and Care Excellence (NICE) guideline on M.E/CFS. The event was part of NICE’s ongoing process to revise its M.E./CFS guideline, with a focus […]

An MP Is Calling For A Debate Into One Of The ‘Biggest Medical Scandals’ Of The 21st Century

Carol Monaghan SNP

  By Steve Topple in The Canary.   A Scottish National Party (SNP) MP is calling for a debate into the controversy surrounding a disease she thinks will be one of the “biggest medical scandals of the 21st century”. Calling for a debate Glasgow North West MP Carol Monaghan has launched an early day motion in parliament […]

From Flash Mobs To Jazz Bands – Musicians Wanted To Play In The Park

Rowntree Park Lodge

From YorkMix.   Rowntree Park will be alive with the sound of music this summer. And one of the musicians could be you! The Friends Of Rowntree Park want visitors to enjoy a soundtrack of live performances. Caroline Lewis, of the friends, said: “We are seeking to encourage music making in the park this summer and are […]

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