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 White of St Bartholomew’s Hospital in London) and its highly questionable effects on the treatment of patients – see PACE vs FOIA: Access Denied.
The current case
Ever since the results of this £5 million (US$8m) publicly-funded trial were published by The Lancet in 2011, patients have been attempting to gain access to the trial data as the results were spun in a surprisingly positive light. In 2014, I made a request under the Freedom of Information Act (FOIA) to ascertain the number of requests which had been made in total. The answer wasn’t clear but the figure seemed to be well in excess of 150. However, very little data has been released so far and patient groups are still puzzled by how the results have continued to be framed in such positive terms.
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