Clark Ellis is a UK writer who is mostly housebound because of Graded Exercise Therapy, a highly controversial treatment for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). In his blog, The Self-Taught Author, he writes about ME/CFS advocacy, "the politics at play, about bad research like PACE trial and good research like the End ME/CFS Project, and interviewing doctors or advocates, fundraising, etc."
Advocacy[edit | edit source]
Mr Ellis wrote the series, "Forbidden Fruits," calling for PACE trial data to be released and in Part 3 began a series calling on UK ME Charities to join in on the PACE trial data requests. Part 5 is an open letter to Association of Young People with ME.
Online presence[edit | edit source]
Learn more[edit | edit source]
See also[edit | edit source]
References[edit | edit source]
- PACE Trial’s Forbidden Fruit: Why We Must Be Allowed A Look Inside 12/13/2015
- PACE Trial’s Forbidden Fruit: Is The Data Really Poisonous? 1/25/2016
- PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release 1/01/2016
- PACE Trial’s Forbidden Fruits: The Fruit of Your Labour 1/15/2016
- PACE Trial’s Forbidden Fruits: An open letter to AYME 1/18/2016
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.