‘We will find a cure for ME’, pledges Stanford’s Prof Ron Davis on visit to Cambridge

Ron Davis has spoken about his ground-breaking work searching for a cure to ME during a conference at the Wellcome Genome Campus.

Prof Davis, from Stanford University, and wife Janet Dafoe regularly attend the Invest in ME Research International ME Conference, now in its 16th year.

Their son, Whitney, was diagnosed with severe ME – myalgic encephalomyelitis, or chronic fatigue syndrome – in 2011, since which time Prof Davis has almost entirely directed his work towards the condition.

“He’s just been lying in bed since 2011,” says Janet of Whitney, now 40, who had been a professional photographer and adventurer.

“He had a series of infections from high school through to when he was in India, helping to build a Tibetan monastery in Ladakh. He worked for President Obama and took photos of the inauguration, then he worked for an environmental group outside and he got a cold and never got better.

“He can’t talk, he can’t eat, he can’t get out of bed,” Janet continues. “He has a J-Tube to pump food in.”

His condition marginally improved recently with the use of a new medication, Abilify.

“It got him able to sit up and type,” Janet says.

New treatments have not been easy to find for ME/CFS. As well as the slowdown in equity investment globally, there’s been an ongoing dispute about the causes of ME since the first diagnosed case in 1934. The psychiatric community is still insisting that there is a psychological component to the disease and have advocated a ‘buck-up’ approach. That analysis has been long disproved – noise, exercise and stress are the worst possible situations for someone with ME – and yet the chemtrails from the debate linger on.

However Prof Davis – professor of biochemistry and genetics and the director of the Stanford Genome Technology Center at Stanford University – is a hardy sort who has faced setbacks before. In 1979, he submitted a proposal to the US NIH (National Institutes of Health) to map the human genome. It was turned down for being ‘too ambitious’. In 1980 he wrote a landmark paper which helped launch the field of genomics, and when the Human Genome Project was launched in 1990 Stanford University – and Prof Davis and his department – were intricately involved. It was completed in 2003.

“In 1979 we wanted to make a genetic map of the human genome and they said it was too big of a project, but it all worked out and that was a precursor to sequencing,” Prof Davis says. “It’s gone further than I thought it would. At the start reducing the cost was the hardest bit. It cost $3billion and then industry got involved and now it’s $300.”

Discussing his experience since he began searching for a cure for ME following Whitney’s diagnosis in 2011, he adds: “There was pushback on the Human Genome Project but it wasn’t the huge pushback you get with this disease.”

Janet says she has been shocked by the ongoing influence in the UK of the belief that ME/CFS is psychosomatic, creating a situation which George Monbiot described in The Guardian in March as “the greatest medical scandal of the 21st century”.

“It’s horrible in the UK,” says Janet of the current situation. “It’s shocking, it’s criminal – it’s malpractice really.”

“Yes,” concurs Ron.

Janet continues: “A group of psychiatrists have decided it’s a psychiatric disorder and exercise can help. It’s all been debunked but they won’t get off of it.

“How ironic that here we are for a really good conference with people doing really good science and right nearby there’s people saying it’s a psychiatric disorder.”

“They never come to meetings and present data,” says Ron.

“They don’t have any data,” says Janet. “It’s bogus.”

“That’s why they don’t come – they get caught out,” says Ron.

“When I read the messages we get from mothers and see how distressed they are it’s so tragic and sad and I feel so helpless because if they raise a fuss, the patients get sectioned, because these people have power over the people with ME and their treatment, and people know it,” says Janet.

“The biggest cause of death for ME sufferers is suicide,” she notes.

But the duo are indefatigable.

“We will find not just a treatment but a cure,” says Ron. “In fact a few do get over ME, and they’re normal. The disease does not do what you’d expect.

“One researcher had ME and she didn’t have a crash and after a year she got better.”

So will there be a diagnostic tool first and then a cure?

“It could be. Everything’s open. Whatever it takes.”

Prof Davis and Janet Dafoe were hosted in Cambridge by Mark Harper, chairman of the Cambridge ME group, who told them: “You’ve done a huge amount to give my members hope, and to bring sparkle into the lives of severely ill people.

“You’ll be very welcome here anytime.”