The fight is only just beginning against Lyme disease
NICE’s guidelines are helpful, but without desperately needed research thousands will continue to suffer
For the first time, The National Institute for Health and Care Excellence (NICE) has published guidance for the NHS on how to diagnose and treat Lyme disease. Its advice represents a step in the right direction, but an overwhelming amount still needs to be done in the fight against this horribly debilitating disease.
I have a deep and personal connection to the illness, as eleven members of my family have been diagnosed with the disease. Through my own experience I’ve seen the truth of the wider picture, having listened to countless sufferers struggling to make sense of how their lives have been ruined by a devastating disease that receives so little public attention and even less medical support.
Through the charity I set up, Caudwell LymeCo, we have managed to raise awareness of the plight of Lyme disease sufferers, and to bring the issue onto the radar of the health service and the government. I met with Jeremy Hunt and Simon Stevens, Chief Executive of NHS England, nearly 2 years ago, at which point they agreed to commission urgent action to look into Lyme disease. Progress is being made, of which the guidelines represent a small fraction, but without concrete action from the Department of Health and NHS England, Lyme disease will continue to go undiagnosed and untreated, leaving tens of thousands suffering and feeling utterly helpless.
Lyme disease can strike anyone at any time. It is an infection predominantly spread by tick bites. It can attack the nervous system, the joints, and all the major organs, such as the brain, the heart, the liver and kidneys, the skin and the eyes. Its impact can be systemically devastating. The disease is the most common and fastest-spreading disease in Europe that is caught from biting insects, spreading at 14% a year. It is no wonder that Suszanna Jakab, the World Health Organization’s regional director for Europe has warned that “this is not the time to lower our guard” in the fight against Lyme.
The illness is also one of the most under-researched illnesses in the western world. We do not know the best way to test for Lyme disease. We do not know the best treatment for Lyme disease, or why some people never get better. And despite the believed rate of transmission, it could in reality be very much higher still. The answers to these crucial questions could not be further from being understood. Many symptoms of Lyme can also be caused by other illnesses, making diagnoses very difficult.
The new NICE guidelines address some of these questions. Crucially, they acknowledge the flaws of existing diagnostic testing, emphasising that with the current standard test it is possible to have Lyme disease even with a negative result. They take a decisive step in broadening the possible ways in which the disease is contracted, recognising that Lyme could be passed on not just from tick bites but also from mother to unborn baby, a possibility that I’ve previously argued needs to be considered. The long-overlooked issue of the disease’s persistence is also recognised in the guideline, as it acknowledges that some people who catch Lyme disease can remain devastatingly ill long-term, or even permanently.
It is certainly the most up to date summary of the scientific evidence about diagnosing and treating Lyme disease. But this knowledge has turned out to be woefully less than some people expected or hoped for, which serves to highlight that it is absolutely vital that further research is commissioned.
The guidelines fall massively short of solving the problem in very important areas. We still have no idea why some people remain ill, how many chronic sufferers there are, and how to cure them. We are no closer to bringing about a truly reliable test to diagnose Lyme disease, and we still don’t even have a complete catalogue of all the symptoms, especially in children.
That we don’t have a cure for chronic Lyme disease I consider to be a national health crisis. We urgently and desperately need scientific evidence on what is an effective treatment for Lyme disease. This scientific evidence is vital in order to improve the lives of patients all across Britain and many other parts of the world.
As an audit of the existing research, the guideline lists what is still needed, and this is the first step forward in improving the situation. But it is only the first step – we desperately need action from the government.
Current National Health Service funding for research into Lyme disease is quite simply insufficient. Only further research can provide the evidence that the NHS needs to implement appropriate policies. The NICE guidelines are not, in many ways, an end in themselves. They are a means of understanding how much more remains to be done in the fight against Lyme disease. The fight is only just beginning.
John Caudwell, Chairman of Caudwell LymeCo