A cover up on the part of British health authorities meant a man who had been infected with CJD from contaminated blood during a transfusion was not told until he was dying what was really wrong with him.
Mark Buckland's family say senior health officials knew he was at risk but failed to tell him until he was dying which meant spent the last three years of his life fighting to find a cure for a disease that he didn't actually have.
When Mark Buckland started to become tired and weak, he was wrongly diagnosed with chronic fatigue syndrome because senior NHS officials decided to keep his exposure to variant CJD a secret.
It was not until three years later when the 32-year-old became too ill to look after himself and began losing his memory that they finally told his family he had the incurable brain disease.
As a result of his death, scientists have discovered that thousands more people could be exposed to vCJD through contaminated blood.
But this has done nothing to comfort Mark Buckland's family who are angry that he and 65 other patients who also received blood donated by people who later developed the terrifying degenerative condition were never told.
In an attempt to excuse their behaviour the officials apparently told the family he might have committed suicide if he had known the truth.
His family believe they and Mark had a right to know he was going to die which would have given him the opportunity to do things such as travel the world before he became too ill.
The cover-up has devastated the Buckland family.
Mr Buckland was a high-flying BT research engineer in Ipswich; he had to be given 40 pints of blood when surgery for an intestinal complaint went wrong in 1997, but unbeknown to anyone one pint was contaminated with variant Creutzfeldt-Jakob disease, the deadly degenerative brain disease spread by eating BSE-infected meat.
The donor who had given the blood died of vCJD in 2000, but it was not known what the risk was of the recipient developing the disease and as there is no test and no cure for vCJD, a high-level Department of Health committee took the decision not to inform Mr Buckland or the other people who had received contaminated blood.
Mr Buckland's doctor was also not told of the risk and when symptoms began to appear in 2003, he was misdiagnosed with ME.
He was told about his exposure the following year but according to his family it was presented as a "1 in 1,000" risk and not anything to worry about.
Mr Buckland was eventually forced to give up work because of his ill health and dedicated himself to a web site supporting work towards a cure for ME.
By January this year he was so ill he had to move in with his parents in Brighton and only then when he began to lose his memory, did officials contact the family to tell them he had vCJD.
He died age 32 in a hospice four months later.