myalgic encephalomyelitis

EHRC Failed To Consult Its Own Disabled Advisers Before Snubbing DWP Deaths Probe

Disability

  By John Pring in Disability News Service.   The equality watchdog failed to consult its own committee of disabled advisers before deciding not to investigate deaths of benefit claimants that have been linked to the Department for Work and Pensions (DWP). It came as disabled activists and relatives of disabled people whose deaths have […]

Physios For ME Secure Funding For Research

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  From Physios for ME website.   As physiotherapists with an interest in Myalgic Encephalomyelitis (ME), we are keen to understand more about what’s happening physiologically when people with ME try to carry out normal daily activities. We know that even simple activities such as getting dressed can cause an increase in symptoms and we […]

Post-Covid Research & Clinical Care Must Include ME/CFS

Research

  From #MEAction.   People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even […]

Coronavirus: Peer Calls For An End To Use Of ‘Vulnerable’ To Describe Disabled People

Disability Dice

  By John Pring in Disability News Service.   A leading disabled campaigner and crossbench peer has called for an end to the use of the word “vulnerable” to describe disabled people. Baroness [Jane] Campbell said the term had been used repeatedly to describe disabled people during the “worst times” of the pandemic crisis. But she […]

Data Firm Zegami Joins Project To Find Cure For ME

Research Study

  By Agata Gurkovska in Zagami.   Zegami, the Oxford University data visualisation spin-out, has joined an international team of medical researchers to try and find the cause of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). The startup believes the project could lead to the discovery of the root cause of the condition […]

As Lockdown Eases, Those Of Us With Chronic Illnesses Must Not Be Left Behind’

Frustration Chronic Illness

  By Helen Wilson-Beevers in The Independent. When Boris announced that pubs, cinemas, hair salons and hotels will reopen from the 4th July, there came collective chatter about reclaimed freedom. There is a palpable feeling holidays and nights out are once again within reach; a new normal is just around the corner. In England, too, shielding for […]

The Impact Of Food On Cognition: Potential Implications For Brain Fog In ME

Research

From Jisc R&D.   This study is looking to recruit both healthy individuals and those with a diagnosis of MILD ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue). The aim is to investigate how food impacts your performance on 2 short cognitive tests, a colour naming task and a memory task. Participants will be allocated to either a food […]

Coronavirus: Government’s Failure To Offer Video PIP Appeals ‘Is Discrimination’

Benefits

  By John Pring in Disability News Service.   The government’s continuing failure to allow benefit appeals to be heard via video conferencing is discriminating against disabled claimants, say welfare rights experts. Many disabled people are being forced to ask for their tribunals to be postponed, because they are only being offered a telephone hearing, […]

The Fear In My Doctor’s Eyes

Anil

  By Anil van der Zee in CAPTURE.DANCE.WORDS.   The honeymoon. Before becoming ill, my relationship with the medical world was always great. It was pretty much straightforward really. During my profession as a dancer, injuries were of course always of a concern. I had to be in close contact with doctors, physiotherapists, massage therapists, […]

Emily, My Inspiration

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    From the  ‘A Life Hidden’ Blog.   Seven years ago today, my first article in The Daily Telegraph was published. It told of the suffering and death of my dear friend Emily Collingridge. Emily had been passionate about raising awareness of ME, and I couldn’t bear the thought of her death passing unnoticed by the […]

Caution And Controversy

Blog

  By Anna Redshaw in her M.E. Myself And I Blog.   This post has been years in the making. And even after sitting on it for so long and coming back to it to triple check I’m expressing myself as carefully and as clearly as I can, it still feels controversial to click Publish. […]

Covid-19 At 14 Weeks—Phantom Speed Cameras, Unknown Limits, And Harsh Penalties

Symptoms

  By Paul Garner in BMJ Opinion.   “If my husband had said he was still sick with covid-19 after a month, I’d say he was milking it.” Straight talking from a Liverpudlian woman on one of my WhatsApp groups in April when I had been ill for a month; what would she say to […]

UK To Launch World’s Largest Genetic Study Into Chronic Fatigue Syndrome

research

  By Haroon Siddique in The Guardian.   The world’s largest genetic study into chronic fatigue syndrome is to be launched in the UK after receiving £3.2m of funding from the Medical Research Council and National Institute for Health Research. The research aims to shine a light on the debilitating long-term condition, about which little is […]

Coronavirus: Disabled People Have Been Excluded And Marginalised, Says Report

Disability Parking

  By John Pring in Disability News Service.   Disabled people have faced discrimination in every area of their lives from the beginning of the coronavirus pandemic, new research by a user-led organisation has found. The research by Inclusion London reveals that the COVID-19 crisis is impacting disabled people across every part of their lives. Disability News […]

Trial By Error: BMJ Responds To Appeals About Norway’s CBT-Music Therapy Study

David Tuller

    By David Tuller, DrPH Earlier this week, I sent a nudge to Professor Imti Choonara, editor-in-chief of BMJ Paediatrics Open, and Fiona Godlee, editorial director of BMJ, about a problematic “feasibility study” published a few months ago. That followed a letter two weeks ago, to which I had not received a response. Previous posts on this […]

The UK ME/CFS Biobank: A Rich Resource Of Samples And Data

Research Study

  From London School of Hygiene and Tropical Medicine.   It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many […]

Healthier Food Can Contain More Contaminants – But There’s A Simple Way To Stay Safe

Food

  By Ruth Fairchild in The Conversation.   A recent study found that brown and organic rice sold in the UK tends to contain significantly more arsenic than white inorganic varieties that are often considered less healthy. Arsenic is found in many foods but can be especially concentrated in rice, particularly in the husk, which is removed to […]

A Novel Neuroinflammatory Paradigm For Chronic Fatigue Syndrome (ME/CFS)

Research

  By Cort Johnson in Health Rising.   Mackay A, Tate WP. A compromised paraventricular nucleus with a dysfunctional hypothalamus: a novel neuro-inflammatory paradigm for ME/CFS. Int J Immunopathol Pharmacol. 2018:32:1-8. The HPA’s nexus in two important systems – the stress response and the immune system, both of which almost everyone believes are impaired in ME/CFS – […]

For The Non-Believers

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  This excellent summary of the scientific evidence for M.E. was shared on Twitter by Research Scientist, Dr Mark Guthridge. M.E. patients face disbelief that they are sick. Many are told that they are simply tired, stressed, anxious, depressed, lazy or malingering. How can people with M.E. respond to such disbelief and lack of understanding? […]

From The Tahoe Outbreak To COVID-19 Dr. Peterson And Simmaron Take On The Coronavirus – And ME/CFS

Simmaron

  By Cort Johnson in Simmaron Research.   “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]

A Letter To ME

Writing Poetry

    A Letter To ME I want to write a letter To me of years ago To tell me of what’s coming up To tell me what’s in store If this was really possible Where then would I start How do I say, what’s coming my way How do I break my heart Do […]

Have You Been A Victim Of Medical Gaslighting ?

Gaslighting

  From A Journey Through The Fog.   Trigger warning; the examples of medical gaslighting highlighted in this post may be distressing to some. There is growing awareness around the prevalence of medical gaslighting, especially amongst female patients. Last week tens of thousands of people took to Twitter to share their horror stories of neglect […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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From The Journal of  Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness […]

Disabled People Forced To Fight For Right To Live Ordinary Lives, MPs Hear

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By John Pring in Disability News Service.   Disabled people are being forced to fight for their right to live ordinary lives because of the flawed and under-resourced social care system, MPs have been told by a disabled campaigner. Anna Severwright told members of the Commons health and social care committee on Tuesday that she and […]

Trial By Error: Joan McParland’s Lightning Process Experience

Lightning

by David Tuller, DrPH Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from illness. […]

Trial By Error: A King’s College London Press Release Hides The Bad News

NLP CBT

  By David Tuller, DrPH In teaching courses on covering public health and medical issues, I have often highlighted how university press releases about studies can read like efforts at obfuscating problematic findings rather than providing an accurate account of research. A recent press release from King’s College London, about a high-profile study published by Lancet […]

Press Release – Scientists Call For More European Research On ME/CFS

OIP

From European ME Coalition.   Brussels, 10 June 2020  More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and […]

Narrowed Small Blood Vessels Linked To Fatigue In ME/CFS

Veins

  The Scheibenbogen Effect With the studies pouring out, it’s getting hard to keep up with Carmen Scheibenbogen and friends in Germany. Scheibenbogen has co-authored no less than five papers on chronic fatigue syndrome (ME/CFS) in 2020. With Klaus Wirth coming on board, the autoantibody testing lab there, and Scheibenbogen and company in a publishing […]

The (Welsh) Health Minister Comments On Covid-19, ME, Rehabilitation & NICE

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From The Welsh Association of ME & CFS Support (WAMES).   The Health Minister Vaughan Gething has replied to the letter WAMES sent to him on International ME Awareness Day highlighting the links between Covid-19, PVFS and ME, and requesting a combined strategy for care.  We note that the forthcoming guidance on rehabilitation “will not be condition specific” so […]

A Letter To Jeremy Hunt

Doctor

  ……and How Millions of ‘MUS’ Patients Lose Out in the NHS. By Goodelf (Part 2 in the ‘Untangling the MUS Web’ series of articles) In my first online post, “Untangling the MUS Web” – https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/ , I revealed how doctors, healthcare commissioners and other healthcare workers have been misled regarding the risks of adopting the current […]

Airport Faces Legal Action Over Wheelchair-User Twice Left ‘Distressed And Humiliated’

Air Travel

By John Pring in Disability News Service.   A wheelchair-user has launched a legal action against Manchester Airport after he was twice left feeling “distressed and humiliated” by how he was treated on journeys to and from a family holiday. Quamer Khaliq, from Ashton-under-Lyne, had to threaten to call the fire brigade after he was […]

From Fight/Flight To Neuroinflammation: Explaining The “Functional Pain” In Fibromyalgia And ME/CFS ?

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By Cort Johnson in Health Rising.   There’s neuroinflammation and there’s the stress response. Recently, we saw Mackay and Tate propose that neuroinflammation in ME/CFS and FM was linked to a whacky stress response centered in the hypothalamus. In 2018 Chinese-Duke University collaboration suggested that the stress response and neuroinflammation are linked as well, although […]

Post Viral Fatigue In Covid-19

Coronavirus Generic 1

  From Frontline. As we enter the next phase of pandemic response, physiotherapy services are looking to support people recovering from Covid-19. One of the most prevalent problems is fatigue. Fatigue following a viral infection is common, but for some people the symptoms may persist for months and impact on their quality of life. We […]

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