A last blog post from a patient long suffering with myalgic encephalomyelitis/chronic fatigue syndrome chose to end her life attracted a lot of attention. Here is a response from a patient who chooses to live and try to inspire others in that choice.
The public conversation has shifted about the biopsychosocial model of myalgic encephalomyelitis (ME; formerly known as chronic fatigue syndrome) in ways that will not be readily reversed.
Carly Maryhew’s Open letter to TEDxBristol regarding Esther Crawley’s “Disrupting Your View of ME” presentation
Calling out another example of TEDx talks falling dreadfully short of their advertised “Only good science.”
Coyne of the Realm’s open letter to the National Health and Research Medical Centre (NHMRC) of Australia
To put it bluntly: detection and diagnosis, as well as research and public policy concerning Myalgic Encephalomyelitis (ME) in Australia are a disaster. There is a high likelihood of the situation becoming worse.
No, seats on the US Institute of Medicine advisory committees are not for sale, despite what the Dutch Parliament was told
How the Executive Director of the Health and Medicine Division of the IoM responded to Professor Pim van Gool, the President of the Dutch Health Council disparaging the reputation of the IoM in testimony to the Dutch Parliament.
Unethical: Why Bristol University SMILE trial should not have been conducted with chronically ill children
If it should have been conducted at all, the first clinical trial of Lightning Process should not have been conducted with chronically ill children. Safety and efficacy had neither been established with adults, nor healthy children.
The providers of Lightning Process in the SMILE trial were not credentialed health professionals and are not bound by ethical codes
CDC – Don’t just discreetly change recommendations for treating chronic fatigue syndrome, publicize the changes!
No one is going to notice important changes to Center for Disease Control recommendations for treating chronic fatigue syndrome unless explanations are often and disseminated. Unless you stumbled on it by accident, you had to be a routine watcher of the CDC website to have noticed a discrete last summer in the agency’s recommendations […]
Bristol University should start cleaning up its clinical trial registries by publishing two psychosocial intervention studies
A story in the feisty Bristol Cable revealed Bristol University ignores its responsibilities to publish results of clinical trials. A follow up story announced the university’s pledge to remedy the situation. The investigation of hidden data excluded psychosocial intervention trials. But here are two trials for which publication is overdue.
Actually, not a dog, but it is an equally lame story: A thief allegedly made off with the only copy of the data from study critics claim never happened. What can be done?
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