Category Archives: News
CFS misdiagnosis – how a teen diagnosed her own rare illness
The Times article, by Mike Pattenden, 16 August 2016: How a teen diagnosed her own rare illness Should you google your symptoms? This 13-year-old did, and it helped to save her life Have you had a niggling pain bothering you … Continue reading
Dr Myhill told not to prescribe antiviral for post viral CFS
Health rising blog post, 23 August 2016: Dr Myhill Stripped of her Right to Prescribe Valtrex off label From an email Dr. Myhill sent to her patients 13 August 2016: We have a problem with me prescribing valacyclovir. Yesterday I attended … Continue reading
9 potential diagnostic tests for ME/CFS
shoutoutaboutme blog post, by Russell Logan, 31 July 2016: 9 potential diagnostic tests for ME/CFS: Highlights of the IACFS submission to NIH RFI on new research strategies Though there are as yet no readily available, well-accepted, objective diagnostic tests for ME and CFS, work … Continue reading
US report says there’s (almost) no evidence CBT/GET work in ME/CFS
Health rising blog, by Cort Johnson, 18 August 2016: Federal Report Says There’s (Almost) No Evidence CBT/GET Work in Chronic Fatigue Syndrome (ME/CFS) This has a been good week for advocacy. It’s shown that smart advocacy works. Twice advocates went … Continue reading
More PACE trial tribunal comments
PACE trial ruling: Respondent Alem Mathees main response The essential daily briefing, 19 August 2016: Chronic Fatigue Syndrome sufferers have just had a small victory Health Rising discussion, 17 August 2016: The PACE Trial’s Big Stumble: UK Tribunal Orders Release of PACE … Continue reading
ME Association challenges Pulse Learning’s classification of ME/CFS as a mental health disorder
ME Association blog post, by Dr Charles Shepherd, 21 August 2016: ME Association challenges Pulse Learning’s classification of ME/CFS as a mental health disorder The ME Association has today asked the medical education website Pulse Learning to remove Chronic Fatigue … Continue reading
New rituximab trial results from Norway
Research abstract: Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) is a disease of unknown etiology. We have previously suggested clinical benefit from B-cell depletion using the monoclonal anti-CD20 antibody rituximab in a randomized and placebo-controlled study. Prolonged responses were then demonstrated in … Continue reading
Reasons given for not releasing PACE trial fitness data
PACE Trial: Reasons Queen Mary University of London gave for not releasing fitness data Tom Kindlon reports that retired mathematics teacher, Graham McPhee, requested the numerical values (for the groups, not individuals) used to create this graph of the fitness … Continue reading
A robot-avatar: easier access to education & reduction in isolation?
Research abstract: This paper presents a qualitative study of deployment and use of a robot as a sick child’s avatar at school. Many children and youth suffer from a range of chronic illnesses that make them, often for long stretches … Continue reading
Selfish mitochondria implicated in a variety of diseases
Vanderbilt University press release, 12 July 2016: Selfish mitochondria implicated in a variety of diseases Mitochondrial disorders are a chameleon-like set of diseases that take many different forms and vary widely from individual to individual. Mitochondria are special organelles found in … Continue reading
