Wednesday, March 16, 2011
The PACE trial, a flawed study from the word go
The answer comes down to that age old argument about patient representation and cohorts? Study the right patients and you get the right answers.
Open a trial to literally anyone with mental health problems and fatigue, close it to anyone severely affected and bedbound and you get the wrong selection criteria and a flawed study.
Please observe here that when referring to M.E/CFS, I am not referring to the variety of patients PACE included in its study, i.e. “I’ve overdone it a bit, been feeling one degree under” chronic-fatigue. I am referring to the Neurological Disease Myalgic Encephalomyelitis, about the full-blown syndrome, a distinct entity under ICD-10 which is NOT stress, burning the candle at both ends, anaemia, obesity or lack of exercise.
I am also not referring to any form of mental illness, which incorporates its own dissimilar trials and tribulations concerning the exploitation of patients.
The early PACE documents came with an attachment circulated amongst the Wessely School that said “watch out for lobbyists”. When thousands of people with M.E/ CFS are up in arms, forming a Resistance against the classification of a psychiatric/hypochondriacal diagnosis, we are not discriminating against people with mental illness or refusing to accept the label, it’s because WE ARE NOT MENTALLY ILL. The misdiagnosis and subsequent treatment aimed at the mentally ill does not help us. Banging down our doors and carting us off to mental wards where we die does not help us.
The disease Myalgic Encephalomyelitis (M.E) has been catalogued by the World Health Organisation (WHO) as ... Read more>>