PACE

Is It Just ME Or Is This A Real Disease ?

Lost

  By George Winter in The Medical Independent. George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME). In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his […]

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

David Tuller

  By David Tuller.   First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

David Tuller

  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

CDC Removes Reference To Disputed ME/CFS Therapies From Website

David Tuller

  By David Tuller in Undark.   The agency has long recommended two controversial treatments for chronic fatigue syndrome. Earlier this month, it quietly made some changes.   For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome: a program of […]

Neuro(logist) – M.E. Militant

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    By Anil van der Zee.   The other day Dr. Jim Faas, insurance physician, lawyer, former President of the Association of Insurance Physicians (NVVG) and Senior Staff Officer at the Dutch unemployment office (UWV bezwaar en beroep), wrote a blog in the biggest Dutch medical news website Medisch Contact about the current situation […]

Missing More: Exercise To Keep Job

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From Missing More. Brett’s experience from Australia illustrates the global impact of UK graded exercise therapy and related research. It also shows the immense pressure that people with ME are under to comply with exercise regimes: When I first was diagnosed with ME, I was told that the illness was psychosomatic and that I had […]

Response To “Why We Are Supporting The MEGA Research Project” Action for ME Nov22/2016

Omega

    By James David Chapman   MEGA: I will not support CFS researchers who refuse to discuss CFS research. I do not believe science and “patient engagement” is served when patients’ questions are blocked.  The continued joint silence over Pace gives me no confidence in the MEGA trial proposals. People with M.E (pwme) have […]

Independent Investigation Reveals NICE Approved Treatment Only A Fraction As Effective As Experts Claim It Is.

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  By Jerome Burne in Health Insight UK.   Would any doctor continue to prescribe a drug which they had been told would benefit 20 per cent of patients with a specific illness, once the truth was revealed to be around 7 per cent, only one percent better than no treatment at all? You’d have […]

No ‘Recovery’ In PACE Trial, New Analysis Finds

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    by Vincent Racaniello in Virology Blog.   Last October, Virology Blog posted David Tuller’s 14,000-word investigation of the many flaws of the PACE trial (link to article), which had reported that cognitive behavior therapy and graded exercise therapy could lead to “improvement” and “recovery” from ME/CFS. The first results, on “improvement,” were published […]

PACE Trial’s ‘Sister’ Study Overlooked

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  Sasha Nimmo reports on David Tuller’s blog in #MEAction.   In his Virology blog post, David Tuller examines results of ‘sister’ to the PACE trial In 2003, when the United Kingdom (UK) Medical Research Council announced the PACE trial, they also announced the Fatigue Intervention by Nurses Evaluation (FINE) trial. Why haven’t we heard […]

Queen Mary University Of London To Appeal Information Commissioner’s Decision On Disclosure Of PACE Trial Data

Valerie

    Story by Valerie Eliot-Smith. I have lived with the illness myalgic encephalomyelitis (ME) for nearly 35 years. The condition is also (misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”. For more information see “About“. I have previously written about the controversial PACE Trial (Principal Investigator: Professor Peter […]

Renowned Scientists Condemn PACE Study

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By Russell Logan in shoutaboutme.com   An international group of scientists has added to the growing condemnation of the PACE trial study, published in the Lancet in 2011, which has propped up poor government and clinical care policies for those with the serious neurological illness myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. An open letter from […]

MP To Raise ME Training For GPs With Health Minister

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On Thursday 20 November I met with Julian Sturdy MP at my home in York.  He had responded very quickly to my request for help in raising ME Awareness. I had explained my aim of raising awareness in my local area to ensure sufferers had somewhere to go and someone to contact when in need […]

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