ME Symptoms

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 […]

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 […]

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 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. […]

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 […]

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 […]

BMJ Rapid Response Re: ME/CFS And Long Covid: Moving Beyond The Controversy – By Dr Charles Shepherd

From The ME Association. An article by Melanie Newman was published in the British Medical Journal on 24 June, and included an interview with Dr Charles Shepherd (Hon. Medical Adviser to the ME Association). While we did not see the final article before publication, and are not happy some of the opinion aired by certain professionals, it […]

Possible Responses To The New NICE Guideline For “ME/CFS”

By Valerie Eliot Smith. THE UPDATED NICE GUIDELINE FOR “ME/CFS” (sic) Background In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the existing guideline on myalgic encephalomyelitis (ME), originally published in 2007. Within the UK, Scotland and Northern Ireland have their own equivalent processes and legal systems. This post relates […]

Trial By Error: Null Outcomes Presented As Success In Yet Another CBT Trial from Prof Trudie Chalder

By David Tuller, DrPH i Virology Blog. Trudie Chalder, a professor of cognitive behavior therapy (CBT) at King’s College London, has recently published yet another high-profile paper: the main results for “efficacy” from a trial of CBT for patients with so-called “persistent physical symptoms” (PPS) in secondary care. As usual with this group of investigators, things haven’t turned […]

The Education Of An Unlikely ME Advocate

By Art Mirin in Health Rising. Art Mirin seemed hardly the person to lead a movement.  A retired mathematician who’d been creating advanced climatological models at the famed Lawrence Livermore National Laboratory in California, Art had never done advocacy before. He had a sick daughter, though, and he wanted to contribute.  A meeting at an […]

When Disease Research Gets Personal

By Claire Concannon in RNZ. Looking for answers Warren Tate hadn’t heard of the disease that would become such a big part of his life until his 14 year-old daughter, got glandular fever. Instead of recovering normally from this viral infection, her fatigue, pain and noise sensitivity symptoms worsened, and, months later, after ruling out […]

Life With ME On The Dutch Benefits Hamster Wheel

By Rob O’Brien. Two years ago, my Dutch father-in-law dropped a casual reference to the British award-winning film I, Daniel Blake after hearing about our latest round with the Dutch government over sick pay benefits. “It sounds a lot like that British film where he gets trapped in the system,” he said. I thought about this when […]

MEA Letter Published By The Times Re: Why Is Britain The Long Covid Capital Of The World ?

From The ME Association. Following a disappointing article from Josh Glancy that appeared in The Times on 14 June, the ME Association and Dr Charles Shepherd have now had an edited version of their letter published this morning. We show both versions of the letter below: Published Letter to The Times 16 June 2021 Re: Why is […]

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