Doctors With M.E. Honorary Fellow And Founding Father Of The Human Genome Project Refutes Claim That Medics Must Agree With NICE ME/CFS Guidelines

From Doctors With M.E. Doctors with M.E. Honorary Fellow Professor Ron Davis has issued a powerful statement condemning the failure of the UK National Institute of Clinical and Care Excellence to maintain its independence. He describes how it has instead accommodated vested interests, which perpetuate low standards and contra-scientific medical belief systems. To read the […]

Public Letter To DHSC, MHRA, HoC, NICE: Call For A ‘Medical Regulatory Agency’

By Doctors With ME. The following public communication from our Governance Board regards the opportunity for a new “Medical Regulatory Agency”, ready for the post-brexit and the machine learning digital eras.  The letter also contains background pertaining to long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and their contributions to lack of pandemic readiness. […]

Dr. Bateman On Cortene And CT38

By Lucinda Bateman, MD | Sep 9, 2021 | BHC News, Home, Long COVID, ME/CFS, Research News. When Cortene contacted BHC with an idea, and an early draft protocol designed to test CT38 as a treatment for ME/CFS, Dr. Suzanne Vernon and I agreed to help them refine the protocol and  conduct the trial. The Cortene-funded trial was an FDA and IRB-approved protocol, and BHC […]

Only A Tiny Proportion Of Responses To National Survey Were Read, Government Suggests

By John Pring in Disability News Service. Only a tiny proportion of the views expressed by the thousands of disabled people who took part in the government’s national disability survey have been read by a minister or civil servant, a freedom of information response suggests. The new information has added fresh ammunition for disabled campaigners […]

ME/CFS May Be Linked To Failure In Energy Supply To The Cells

By Elise Kjørstad in Opinion. Researchers at the University of Bergen and Haukeland University Hospital were part of a research team for a new study that found differences in blood samples between ME/CFS patients and healthy people. Patients with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, had different levels of some substances that affect energy metabolism in […]

Physios For ME Response To Delayed NICE Guidelines

From Physio’s For ME. The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines […]

An Audit Of UK Hospital Doctors’ Knowledge And Experience Of Myalgic Encephalomyelitis

By Keng Ngee Hng et al. Abstract Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it. Materials and Methods: Participants […]

September Message: Cortene Study Published

By Suzanne D. Vernon, PhD | Sep 3, 2021 | BHC News, Home, Long COVID, ME/CFS, Newsletters In 2018 the Food and Drug Administration approved a physician-sponsored Investigational New Drug (IND) Application, to investigate the safety, tolerability and efficacy of CT38 in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Dr. Bateman was the Principal Investigator for this pilot phase 1/2 open-label clinical trial that […]

Long Covid & ME/CFS: Information & Management By Dr Charles Shepherd

By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. The ME Association (MEA) has been helping people with post-viral fatigue/debility, post-viral fatigue syndromes (PVFS) and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for many years. Back in April 2020 we became aware of an increasing number of people who had been ill with COVID-19 and were not […]

Clinical Trial Provides Preliminary Evidence Of A Cure For Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) And Long Covid

Cortene Inc. announces publication of its InTiME clinical trial in which a short subcutaneous infusion of its experimental drug, CT38, achieved sustained symptom improvement in ME/CFS.  The company intends to test CT38 in Long Covid, the post-acute stage of COVID-19 infection, which is considered by many to be the latest trigger for ME/CFS. Cortene believes […]

September 2021 Newsletter

Greetings! Welcome to our ME International newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know.  Sincerely,Jim Lutey, Editor James.Lutey@ME-International.orgColleen Steckel, Editor

Blog: A Brief Guide To Disability Terminology And Theory In Ancient World Studies

By Alexandra Morris In Society For Classical Studies. Content warning: disability slurs & ableist language As our culture changes, so, too, does the language that we use. This post is an invitation to discuss what is, at present, a culturally appropriate approach to language for writing or teaching about disability in the ancient world. We must […]

Trial By Error: A Letter Urging NICE To Publish ME/CFS Guideline Without Delay

By David Tuller, DrPH This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care Excellence. ********** Professor Gillian Leng CBEChief ExecutiveNational Institute for Health and Care Excellence Dear Professor Leng, Please find below a letter urging NICE to publish the new ME/CFS guideline, […]

What We’re Not Being Told About ME

By Tom Chivers in Unherd. NICE won’t admit its treatment of the chronic disease doesn’t work. There is surely no disease more cruelly misnamed than “chronic fatigue syndrome”. It is mysterious, apparently triggered by viral infection, and can last for months, decades, even a lifetime. Patients can be housebound or even bedbound for years. But […]

Doctor Does Not Always Know Best

By Angela Tilby in Church Times. I CAN hardly think of any condition more difficult to cope with than myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Usually the result of a viral infection, it can manifest in many ways, one of the worst being the loss of the ability to be refreshed by […]

Public Letter To DHSC, MHRA, HoC, NICE: Call for A ‘Medical Regulatory Agency’

By Doctors With ME. The following public communication from our Governance Board regards the opportunity for a new “Medical Regulatory Agency”, ready for the post-brexit and the machine learning digital eras.  The letter also contains background pertaining to long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and their contributions to lack of pandemic readiness. […]

Is the Sunk Cost Fallacy ‘First Doing Harm’ In Chronic Fatigue Syndrome?

By Steven Lubet in Social Science Space. It is a truism in psychology that old ideas die hard and even educated minds are hard to change, but it is still distressing to see the phenomenon displayed in medicine, where open-mindedness is formally celebrated as a virtue. Recent events in the United Kingdom, however, establish once again that settled […]

Mitochondrial Enhancers For ME/CFS And Fibromyalgia Pt III: Magnesium

In the third part of the Mitochondrial Enhancers for ME/CFS and Fibromyalgia series, we turn to magnesium – a mineral that potentially impacts an astonishing array of processes. The Mitochondrial Enhancers for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Series Pt I: D-Ribose, CoQ10 and PQQ Pt II: L-carnitine and Acetylcarnitine Ubiquitous and underrated magnesium (Mg) […]

Planned Review Statement Of NICE Guidelines For ME CG85

From Invest in ME Research. Following the astonishing decision by NICE to “pause” the release of the 2021 Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS) – CG869 [1] then the review that Invest in ME Research was preparing had to be stalled also. NICE has been totally lacking in transparency […]

Chronic Fatigue Syndrome: Is The Biopsychosocial Model Responsible For Patient Dissatisfaction And Harm?

By Keith J Geraghty and Aneez Esmail in the British Journal of General Practice. In 1977 George Engel wrote about the need for an ‘integrated approach’ in medicine that moved the focus beyond biological mechanisms of disease to include all pertinent aspects of illness presentation, setting out a ‘biopsychosocial model’.1 Around the same time, McEvedy and Beard asserted […]

NICE Update

NICE guideline update – 27th August 2021 ” NICE announces next steps for ME/CFS guideline NICE recognises the importance to patients of the updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) and is keen to move forwards as quickly as possible. Following the pause to the publication of […]

‘We Are In The Dark’: Despair For ME Patients As Doctors Can’t Agree On Treatment

By Fiama Baker in Huffpost. People with ME, otherwise known as chronic fatigue syndrome, are still waiting for doctors to agree on the best way to treat the condition. ME, which stands for myalgic encephalomyelitis, is a little understood condition characterised by extreme tiredness, muscle and join pain, brain fog and sleeping problems. For years, patients and […]

Invest In ME Research Summer 2021 Newsletter

The pandemic has affected, and continues to affect everything.2020 was an awful year – yet 2021 seems to be eclipsing that in many ways.We are not sure to whom we can accredit the image to the right – yet it sums up much of the experiences and frustration.However, despite the constraints placed upon everybody, the […]

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