ME Treatments And Therapies

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 […]

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 […]

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 […]

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 […]

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, […]

Caution And Controversy

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  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. […]

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 […]

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

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  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 […]

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 […]

A Letter To ME

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    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 ?

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  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 […]

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 […]

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 […]

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 […]

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 […]

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. […]

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 […]

ME Awareness: Failure To Accurately Diagnose Can Lead To Lifetime Of Misery And Suffering

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  By Debbie Mckno in the ME Awareness website. My name is Debbie. Here is the story of my long, exhausting, and difficult battle to get diagnosed with Fibromyalgia and Myalgic Encephalomyelitis. From 17 years old, I was told by doctors, “You are just run down.” I had constant infections, viruses, and chronic tonsillitis. Feeling […]

Living Life ‘Light’ With ME

Writing Poetry

  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 […]

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 […]

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