ME Research And Researchers

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 […]

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

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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

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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 […]

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 […]

Unseen: Black People Living With ME

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  By Wilhelmina Jenkins in #MEAction.  When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that […]

The ‘Lightning Process’: Implausible, Unproven, Hyped And Expensive

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  By Edzard Ernst in edzardernst.com. The Lightning Process  (LP) is a commercial programme developed by Phil Parker based on ideas from osteopathy, life coaching and neuro-linguistic programming. It has been endorsed by celebrities like Martine McCutcheon and Esther Rantzen, who credits it for her daughter’s recovery from ME. Parker claims that LP works by teaching people to […]

Trial By Error: Two Letters To Dagbladet About Its ME Coverage

David Tuller

  By David Tuller in Trial By Error. In recent weeks, the Norwegian tabloid Dagbladet has published a series of articles about ME, which it also calls CFS/ME. These articles have promoted the use of the Lightning Process as an intervention, criticized patients and the Norwegian ME Association for expressing opinions about the Lightning Process and cognitive […]

Drugging The Gut Microbiome

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  By Clare Sansom in Chemistry World.   All disease begins in the gut. That saying is attributed to the ancient Greek physician Hippocrates, who gave his name to the oath that doctors still use today. It is undoubtedly a simplification, but an enormous range of diseases, many with no digestive symptoms, have been associated […]

Are Intranasal Drugs The Future For ME/CFS And Fibromyalgia ?

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By Cort Johnson in Health Rising.   The neuroinflammation findings in chronic fatigue syndrome (ME/CFS) and fibromyalagia (FM), while restricted to a few studies, are still pretty compelling. We know that many, if not all of the symptoms associated with ME/CFS and FM such as fatigue, pain, cognitive problems, and mood issues can be produced […]

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 […]

Trial By Error: Norway’s Double Whammy Of Fuzzy Science

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    By David Tuller, DrPH Norway’s got a double whammy going on. First there’s the group of investigators that seems to have had trouble determining whether their newly published research on CBT and music therapy was an actual randomized trial or merely a feasibility study. (More on that below.) Then we have Dagbladet, a widely […]

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 […]

Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

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    By Hilda Bastian in PLOS  Blogs. Sometimes, a dispute with a consumer movement comes along that has profound implications for far more than the people in it. I think the dramatic clash between the ME/CFS patient community and a power base in the evidence community is one of those. It points to weaknesses in […]

Living Life ‘Light’ With ME

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  LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

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From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

Sadly, COVID-19 Could Just Be The Start Of Your Problems..

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  By Spoonseeker.   I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems. Ever since […]

‘Leave No One Behind’ – ME Awareness Day 2020

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  There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease. Thoughts on ME & Covid-19 by Corina Duyn. For the past seven weeks – 55 days – life as we knew it has changed forever. A virus which nobody can see, but […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law And Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

Trial By Error: Today Is May 12th And Everyone’s Missing

David Tuller

  By David Tuller, DrPH Today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)—often shortened to International ME (or ME/CFS) and Fibromyalgia Awareness Day. Besides ME, other diseases included in the CIND group, per the May 12th International Awareness Day site, are chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivity. […]

The Blood Vessel Crunch: A Unifying Hypothesis For ME/CFS

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  By Cort Johnson in Simmaron Research.   This is another hypothesis paper that gives one hope – and makes one wonder if the authors might have a handle on what’s happening with chronic fatigue syndrome (ME/CFS). The paper proposes that a tantalizingly simple problem – an autoimmune attack on just one receptor – out […]

SEID Is Killing ME

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  From ME Advocacy. Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, using […]

Study Of The Possible Conversion Of COVID-19 Patients To ME / CFS

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  From The Open Medicine Foundation.   Open Medicine Foundation is excited to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae to ascertain whether they convert to ME / CFS and to study the molecular transformation if it occurs. This will involve  collection of body […]

Trial By Error: Merck Manual Still Disseminates GET/CBT Advice

David Tuller

  By David Tuller, DrPH The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense. Although […]

COVID-19, NICE And ME: Towards Litigation ?

Valerie Eliot-Smith

  By Valerie Eliot Smith   On 18 March 2020, I tweeted this: “#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”    Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an […]

7 Signs That You’re Running Out Of Spoons

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    By ME/CFS Self-Help Guru.   One frustrating thing about energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, is that energy levels can fluctuate from one day to the next. Christine Miserandino’s Spoon Theory has helped many people understand the concept of rationing out your energy by relating an energy unit to a spoon, […]

For ME/CFS Patients, Viral Immunities Come At A Devastating, Lifelong Cost

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  By Scott LaFee in USC San Diego Health.   Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities — physical or mental — because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone […]

Explaining ME/CFS ? Prusty / Naviaux Study Ties Infections To Energy Breakdowns

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  By Cort Johnson in Health Rising. Unexpected synchronies are always a good sign. Many, of course, are familiar with Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD). Naviaux’s metabolomic work and his Cell Danger Response (CDR) hypothesis have opened up new possible ways of understanding ME/CFS, autism and other diseases. […]

ME/CFS Research During The Time Of The Coronavirus: Shutdowns And Opportunities

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By Cort Johnson in Health Rising.   As we enter a second month of a more or less complete shutdown of the economy, a burning question arose – what the heck was going on with our precious chronic fatigue syndrome (ME/CFS) research?  Was it stuck in neutral or proceeding? Had our researchers, like so many […]

Trial By Error: Oxford Health Blinks, Removes Pamphlet On Post-COVID Illness

David Tuller

  By David Tuller, DrPH. In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent […]

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