Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

USING A HEART RATE MONITOR TO PREVENT POST-EXERTIONAL MALAISE IN ME/CFS

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    By Karman Kregloe in Solve CFS.   One of the identifying characteristics and key symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is an intolerance to even mild exertion, known as Post-Exertional Malaise or PEM. In simple terms, this means that when people with ME/CFS engage in activity – even just walking to […]

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

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  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 […]

Coronavirus And ME: Doctors Fear Wave Of Chronic Fatigue Syndrome

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  From The Week.   As the UK’s daily death tolls fall and the immediate threat of Covid-19 recedes, doctors are warning that the outbreak may lead to a long-term surge in cases of a debilitating and untreatable disease. Chronic fatigue syndrome, also known as myalgic encephalomyelitis or CFS/ME, is an “illness with a wide […]

The York Access Group

Disabled Access

Just to let you know that The York Access and Mobility Club has been renamed The York Access Group. This group will be working with others in the York area to improve disability access to amenities in York, so that we can all enjoy our beautiful city to the full, and to not be restricted […]

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 […]

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

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  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 […]

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

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  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 […]

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, […]

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

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  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 […]

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 […]

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

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  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 […]

Narrowed Small Blood Vessels Linked To Fatigue In ME/CFS

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  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 […]

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

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  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 […]

Bacteriophage Lyme Test Offers ME/CFS Patient New Possibility

Deer tick, Ixodes scapularis, on a fingertip

  By Dominic Stanculescu in Health Rising.    Dominic reports on the new Phelix bacteriophage Lyme test his wife with ME/CFS tested positive on. Possible new “break-through” blood test for Lyme and other tick-borne diseases Summary: A new type of blood test for tick-borne bacterial infections became available in September 2019: the Phelix Phage Test. The test looks […]

Harrogate Charity Urges Businesses Coming Out Of Lockdown To Consider Disabled People In Pre-opening Preparations

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  From The Yorkshire Times.   A Harrogate charity is urging businesses coming out of lockdown to consider the needs of disabled people in their pre-opening preparations. And for those opening their doors this coming Monday (June 1) – and in two weeks’ time – Disability Action Yorkshire has published guidance on how to achieve […]

OMF Announces New Treatment Trial

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  From Open Medicine Foundation.   As part of #MayMomentum, Open Medicine Foundation is thrilled to announce a new clinical trial that builds on OMF-funded research and shows the interconnected strategies of the four OMF-Established ME / CFS Collaborative Research Centers. We hope that you will agree that this thoughtful research strategy deserves your support and that today […]

My Comments To The Cochrane Review On Exercise Therapy For CFS

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By ME/CFS skeptic.   Problems with the amended version (Version published: 02 October 2019) part I. I appreciate the efforts made by Cochrane and the authors to correct some of the errors in the previous version of this review. There are however some major problems that remain and significantly impact the results and conclusion. I hope […]

Untangling The MUS Web

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  By Good Elf in Opposing MEGA. Untangling The MUS Web How badly have UK proponents of ‘Medically Unexplained Symptoms’ (MUS) misled the medical community? From the murky mire of ‘medical’ literature on ‘MUS’, one reference emerges as more rancid than the rest. This 2001 paper – https://www.sciencedirect.com/…/…/abs/pii/S0022399901002239… – by Nimnuan, Wessely and Hotopf has been used […]

Seizing the Moment: International ME/CFS COVID-19 Research Effort Begins

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  By Cort Johnson in Health Rising.   “I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms.” Paul Garner – Infectious Diseases Specialist A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds […]

COVID-19 & The 2nd Wind Blows Into ME/CFS

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  By Jennie Jacques in jennie jacques.com.   I have a keen interest in what happens to our body after severe infection, particularly viral infection. And I would like to start my article by highlighting (with gratitude) ‘New Scientist’ who have pre-warned us, “Viral infections have previously been linked to problems with long-term fatigue symptoms. […]

Paul Garner: Covid-19 And Fatigue—A Game Of Snakes And Ladders

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  By Paul Garner in BMJ BMJ Blogs.   It’s over, I thought! It was the beginning of May, after the weirdest seven weeks of illness I had ever had, a roller coaster of exhaustion, pain everywhere, tinnitus, headaches, and fog: I felt remarkably well, almost high. The aches had gone, my mind was alive, […]

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