Background 

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 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…