ME World Perspective

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 […]

Data Firm Zegami Joins Project To Find Cure For ME

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  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 […]

The Fear In My Doctor’s Eyes

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  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 […]

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 […]

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 […]

Trial By Error: Joan McParland’s Lightning Process Experience

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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. […]

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 […]

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 […]

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 […]

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 […]

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 […]

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. […]

ME And The Pain Of Looking Forward

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By talmandan in The Low Side Blog.   I’ve spent the last six weeks with some strange form of writer’s block. I don’t know if it has just coincidentally been parallel to a global pandemic, or due to some debilitating levels of ME related exhaustion, or a combination of both. I’ve watched while chronic illness bloggers […]

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 […]

What Have Tea And Cake Got To Do With M.E. ?

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    By Anna Redshaw in her M.E. Myself and I Blog.   In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t […]

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 […]

Scientists Warn COVID-19 Could Lead To Neurological Complications In Some Patients

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By NATHAN DENETTE/THE CANADIAN PRESS. While the new coronavirus is known to cause respiratory illness, some scientists suggest it can also potentially lead to brain and nerve damage in certain patients. Beyond the typical symptoms of COVID-19, including fever, cough and difficulty breathing, doctors around the world have reported cases of infected patients with an […]

The ME Association End Of Week Research Round-Up | 10 April 2020

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By Charlotte Stephens, Research Correspondent, ME Association. We show below brief summaries of the research studies about ME/CFS that have been published in the last week, followed by the abstracts from those studies. This information will be included in the monthly update to the central Research Index which is made freely available as a download at the […]

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