“We miss him, but we’ve been missing him for a long time.”
Beth Jarrett, who lost her brother Tom mere months ago to Chronic Fatigue Syndrome (CFS), was one of many protesters at Radcliffe Camera today hoping to raise awareness for the disease.
The group lined up more than a hundred pairs of shoes outside the historic landmark, which represented sufferers who are unable to protest on their own behalf because of their debilitating illness.
Ms Jarrett added: “Many people can’t advocate, because they are physically unable to leave their homes. Some cannot even open their eyes or speak.”
The Millions Missing protest aimed to kickstart a national conversation about Chronic Fatigue Syndrome (CFS), a condition which can leave sufferers housebound for decades but is still almost a complete mystery.
More than 100 Oxfordshire sufferers who would love to attend and show their support are not be able to: instead, as with similar events taking place across the world today, they will ask friends or family to take an item of clothing to represent them.
The event was organised by Nicki Strong with her daughter Lara, a CFS sufferer for about ten years.
Mrs Strong said: “This affects 17-20 million people in the world, and 250,000 in the UK and people are mostly hidden away. That’s why we have these shoes here, to represent the people who are too ill to leave their homes and beds to protest.
"Healthy people like me have to speak up, we need change, we desperately need the government to take us seriously and we need better medical education on the nature of this disease and the fact that CBT and graded exercise do not help, and in fact graded exercise can make some people worse.
“We need proper biomedical research urgently.”
The major topic of conversation at today's demo is likely to be the news that CFS sufferers have finally "debunked" a controversial study into the condition after years of fighting.
A trial by researchers at Queen Mary University of London concluded that sufferers could use behavioural techniques to help themselves.
A group of CFS patients advised by academics have now re-analysed the data and concluded the "recovery" shown by patients on cognitive behaviour therapy in the study was "not statistically significant".
Nicki Strong and Lara Strong said they were "thrilled" with the new conclusion.
Mrs Strong, who lives in Tiddington near Thame, said: "We are finally getting to the truth."