Invisible / Chronic Illness

Free Opportunities For York Businesses

Two things York businesses might want to get involved in at no cost. Join the York ME Community Inter-Company Fantasy Football League to help raise Awareness of those with ME in York. Info at . Plus free advertising at the York Access Hub.  Visit

What Freedom Day Means To The Disabled

Helen Jones explains what ‘Freedom Day’ means for disabled people On so called ‘Freedom Day’, instead of celebratory dancing and drinking, many disabled people were reacting with horror and retreating back into a state of isolation. In fact, one in seven disabled people plan to keep shielding despite the lack of support available from the government to do […]

Long Covid Has Shed New Light On ME (Chronic Fatigue Syndrome), Once Disparagingly Dismissed As ‘Yuppie Flu’ – Professor Eleanor Riley

By Eleanor Riley in the Scotsman. Given the slim pickings of the last year, I am tempted to grasp at one wee sliver of silver in suggesting that the pandemic – specifically some aspects of “long Covid” – has shone a welcome light on the long misunderstood condition known as myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Disparagingly […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied

By Anthony L. Komaroff in MDPI. Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness defined predominantly by symptoms. Routine laboratory test results often are normal, raising the question of whether there are any underlying objective abnormalities. In the past 20 years, however, new research technologies have uncovered a series of biological abnormalities in people with […]

Statement Presented To The Council: Ensuring Access For All

From The York Disability Rights Forum. On Thursday 15th July, York Labour took a motion to a full council meeting (agenda item 8) that seeks to make the city centre fully accessible. The motion passed but with significant ammendments and we will be posting a blog that explores those changes and what they mean for the motion […]

Trial By Error: CBT Model Of Medically Unexplained Symptoms, Explained; CBT Trial For Q-Fever Fatigue

By David Tuller in Virology Blog. As I have recently written, four major clinical trials of CBT for so-called MUS have documented the opposite of what the investigators hoped to prove. In fact, the evidence from this research suggests that CBT is not an effective treatment for these conditions. That hasn’t stopped these investigators from claiming […]

DwME Joins Call For NICE To Maintain Scientific Process

From Doctors With ME. Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community. DwME considers the 2021 NICE guideline to be a watershed moment in the history of […]

News In Brief – July 2021

From Science For ME. This thread has a Science for ME ‘News in Brief’ post for each week in July 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. to read all the news, click on the link below: News in Brief – July 2021 | Science for ME (

ME/CFS And The Coronavirus Vaccine: Is There A Better Way ?

By Brendan in Health Rising. The choice has been a difficult one: protect oneself from a potentially dangerous virus but risk a relapse by getting the coronavirus vaccine, or not get the vaccine and hope that you don’t come down with the virus. Health Rising’s poll suggests that many people with ME/CFS/FM are indeed having a […]

Disabled People’s Organisations Draw Up 10-Year Plan To Tackle Inequality

By John Pring in Disability News Service. Disabled people’s organisations have sketched out a 10-year plan – at a cost of up to £18 million – to tackle the “deep and persistent” inequality, marginalisation and discrimination that is blighting the lives of millions of disabled people. A new report, built on research by eight regional […]

Disabled Councillors Blocked From Accessibility Vote — Because They Are Disabled

By Jasmine Andersson in iNews. A council ballot turned sour when two councillors were blocked from voting in an accessibility debate — because they are disabled. Councillors Katie Lomas and Ashley Mason were told by York City Council they had “a prejudicial interest” in vote on improving accessibility in the town centre because they are Blue Badge holders. […]

York Access Hub

The aim of the Hub is to have somewhere for both the residents of York, and visitors to go to when they want to find somewhere that’s accessible to them, despite their disability. To make this happen, we welcome all businesses to advertise for free on this site through completing the Contact Form. You will […]

We Are Failing People With Very Severe ME/CFS

By Amber Ella in Health Rising. The point of no return. I have advocated for three people with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the past few years. Each time I experience the same sense of frustration, dread, and panic over my inability to connect the dots required to pull someone back from the […]

Hypothesis Predicts Major Failure Point In Chronic Fatigue Syndrome (ME/CFS)

By Cort Johnson in Health Rising. After attempting to explain the cardiovascular issues in ME/CFS, Klaus Wirth and Carmen Scheibenbogen take on the energy and muscle issues. Warning – this is complex! Klaus Wirth and Carmen Scheibenbogen brought the chronic fatigue syndrome (ME/CFS) world something entirely new in 2020 with their hypothesis paper, “A Unifying […]

Honorary Fellows And DwME Leadership Cited, Highlighting The Medical Profession’s Move Towards Belief And Support

Doctors With ME in The Guardian. Doctors with M.E. Honorary Fellows and Leadership were quoted extensively in a recent article article about post-viral disease by Christina Frangou. Published in the Guardian, the article has been well received by experts in the field and is entitled“‘I felt betrayed’: how Covid research could help patients living with chronic fatigue […]

The York Access Hub

There’s a new website launching in York soon called the York Access Hub.  It will offer free advertising to York businesses including text, photos and a little information as to how accessible your business is to the disabled community. The idea is that it will be the one stop shop for visitors to York, either […]

Open Letter: Being A Carer For My Wife With ME

From the ME and Me Blog. Martin met his wife over a decade ago, he’s watched as ME attacks the person he loves. His knowledge of ME has grown over the years and he’s now Lex’s husband and carer. Read his open letter below. By Martin Bates. Hi all, I met Lex 11 years ago […]

Position Statement: 2021 NICE Guideline Update

From Doctors With ME. On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise […]

The Importance Of Listening In Treating Invisible Illness And Long-Haul COVID-19

By Dorothy Wall MA in AMA Journal of Ethics. Abstract Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of […]

Follow-Up To Previous Post On Responses To The Draft NICE Guideline For “ME/CFS” + The Need For A Communications Strategy Rethink

By Valerie Eliot Smith. This post follows up on some of the feedback from my previous post on possible community responses to the draft NICE guideline for “ME/CFS”. A number of points have been raised directly and on social media. It’s easier to address them here rather than trying to pick them off individually.  NICE GUIDELINE RESPONSES Re-cap […]

Beyond Bones: The Relevance Of Variants Of Connective Tissue (Hypermobility) To Fibromyalgia, ME/CFS And Controversies Surrounding Diagnostic Classification: An Observational Study

By Jessica A Eccles et al in RCP Journals. ABSTRACT Background Fibromyalgia and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are poorly understood conditions with overlapping symptoms, fuelling debate as to whether they are manifestations of the same spectrum or separate entities. Both are associated with hypermobility, but this remains significantly undiagnosed, despite impact on quality […]

‘I Felt Betrayed’: How Covid Research Could Help Patients Living With Chronic Fatigue Syndrome

By Christina Frangou in The Guardian. In the fall of 2016, Ashanti Daniel, a nurse in Beverly Hills, California, went to an infectious disease physician looking for answers about a weird illness she couldn’t shake. After falling sick with a virus four months earlier, she still felt too tired to stand up in the shower. The appointment […]

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