A MOTHER who lost her son to the human strain of mad cow disease is demanding the government be more 'transparent' about the number of people dying from vCJD.
Christine Lord's 24-year-old son Andrew died from variant Creutzfeldt-Jakob Disease (vCJD) in 2007.
According to national figures he is among 168 people to have died from the disease since 1995.
But Mrs Lord, 52, from Southsea, is disputing the statistics and claims many more have died from the killer-brain bug.
'The list by the government doesn't represent the real number of people dying from vCJD,' said Mrs Lord.
'The government say that one or two a year are dying from the disease but I believe there are many more.
'Dozens have come forward and spoken to me since Andrew died in 2007.
'The government is manipulating figures to falsely reassure the public, as they did during BSE.
'I'm demanding more transparency from them.
'The public deserve to know the truth.'
The National Creutzfeldt-Jakob Disease Surveillance Unit collate statistics for the number of vCJD deaths, on behalf of the Department of Health.
According to the unit's website the number of vCJD deaths was highest in the early 2000s, peaking in 2004 at 28 deaths.
But the figures show cases have dropped significantly since then, to between one and five cases a year.
But Mrs Lord says many victims have never appeared on the official statistics and so today, on Human BSE Memorial Day, she is publishing her own list of 163 names from all over the country who had died from vCJD - including nine from the local area.
She said: 'It's the first comprehensive list of this kind anywhere in the world.
'A lot of these names aren't on the government list. The families have been told for whatever reason their loved one won't be added to it because they say it's only a probable case.
'This gives the appearance that the disease has disappeared, but it hasn't.'
But the Department of Health says it is unlikely cases are not included on the official national list.
A spokeswoman for the department said: 'vCJD presents as such a serious neurological illness that clinicians are unlikely to not refer suspected cases to the National Surveillance Unit, who independent of government publish data according to internationally agreed criteria.'
She added: 'All clinicians are encouraged to report any suspected case of CJD to the surveillance unit, and if families wish for any case to be reviewed they may ask clinicians to refer them.'
Mrs Lord will join dozens of relatives of people who have died from vCJD in London today to mark Human BSE Memorial Day.
Names of victims will be read out and roses placed in the Thames in memory of those who have died.
Anyone affected by vCJD or who would like to discuss the disease with Mrs Lord should visit firstname.lastname@example.org.
CAMPAIGN Christine Lord with her son Andrew, pictured on a holiday in New York
‘Ministers need to come clean on mad cow deaths'
The public deserve to know the truth
Campaigner Christine Lord
Mother of victim claims the true number of dead is far higher